Last night while resting and knitting in the recliner I was struck with a sudden and excruciating pain in the hips; and ascertained that it must be the bone pain that I was told was a side effect of the nupagen injections. I took a powerful pain pill. That only took the edge off so that I was able to get to sleep!
Ann picked me up this morning to take me to SCCA for labs and clinic evaluation. When I told the doctor and nurse about the pain, the biggest grins I've seen in a long time broke across their faces! They said that the pain was a good sign that the stem cells themselves have shown up! So back to the lab for another blood test to confirm. The target number for stem cells is 10. At about 1:00 p.m., Geoffrey answered a call from the nurse at SCCA who I saw this morning. She said that my number resulting from the test was 43!! So tomorrow, I'm scheduled to go to SCCA at 8:00 a.m. to begin the stem cell harvest! Geoffrey is charging his camera as I write, to take pictures so that we can share this long awaited milestone with you. More later, and probably via Geoffrey's prose.
Saturday, June 5, 2010
Thursday, June 3, 2010
Gettin' 'er Done II
Getting closer! Last Tuesday evening through Saturday night were spent hooked up to IV bags of chemotherapy drugs and hydration. Sunday I received 2 units of blood over an 8-hour period, got my first neupagen shot and went home. This week, Geoffrey is taking me to SCCA daily for blood draws, clinic evaluations and neupagen shots.
Invisible results: My white blood cell (WBC) counts are now falling; and in my case, that's good! As of today's blood draw, my neutraphil count (the WBCs that provide us with immunity) was down to 9 from 18 on Monday--well on the way to 0. That's why for the time being I have to stay away from gatherings of people. Somebody in the mix might be coming down with a cold; and that would be dangerous for me at this point.
What's the next milestone? After the WBCs bottom out, they'll start to climb again, thanks to the neupagen shots. This signals that little baby stem cells are generating, and spilling into my blood stream. When that count reaches the magic threshold, tests will be done to make sure that it's really stem cells. Then, the stem cell HARVEST!
How's Geoffrey holding up? This adventure is taking its toll on him--he's my first line of defense. There's a lot that has to be done--maintaining a cleaner than normal environment in the house, especially kitchen, flushing my central line, changing the dressing on my Hickman catheter--but he has courageously risen to the challenge! He is so vigilant and takes such good care of me. He gets me to my appointments, asks questions and doesn't stop until he understands the answer. He monitors my medicines, cause sometimes I get mixed up. I trust him with my life. Thank you Geoffrey!
And many thanks to all of you for your concern, interest, notes, healing thoughts and prayers. More later as this adventure unfolds! Peace!
Invisible results: My white blood cell (WBC) counts are now falling; and in my case, that's good! As of today's blood draw, my neutraphil count (the WBCs that provide us with immunity) was down to 9 from 18 on Monday--well on the way to 0. That's why for the time being I have to stay away from gatherings of people. Somebody in the mix might be coming down with a cold; and that would be dangerous for me at this point.
Visible Results: I didn't get sick from the chemo like anticipated, and so far I still have hair! While in the hospital, I took 1 - 3 mile walks around the halls. Right now, I'm very fatigued, and haven't been sleeping much the past couple of nights. (Suggestions welcome.)
What's the next milestone? After the WBCs bottom out, they'll start to climb again, thanks to the neupagen shots. This signals that little baby stem cells are generating, and spilling into my blood stream. When that count reaches the magic threshold, tests will be done to make sure that it's really stem cells. Then, the stem cell HARVEST!
How's Geoffrey holding up? This adventure is taking its toll on him--he's my first line of defense. There's a lot that has to be done--maintaining a cleaner than normal environment in the house, especially kitchen, flushing my central line, changing the dressing on my Hickman catheter--but he has courageously risen to the challenge! He is so vigilant and takes such good care of me. He gets me to my appointments, asks questions and doesn't stop until he understands the answer. He monitors my medicines, cause sometimes I get mixed up. I trust him with my life. Thank you Geoffrey!
And many thanks to all of you for your concern, interest, notes, healing thoughts and prayers. More later as this adventure unfolds! Peace!
Monday, May 24, 2010
Gettin' 'er Done!
Hi everybody! I'm not quite as poetic or introspective as the persona Geoffrey has designed for me, but want to let you know what's happening from my own ten fingers. Geoffrey and I met with the attending physician today. He gave us the results of the tests I've taken for the past week and a half. Blood counts are good, kidney & liver function are in excellent order.
After the chemotherapy I've had to date, the monoclonal protein (or M-spike: a marker for multiple myeloma) is at 1.4, down from 8.9 when I was first diagnosed. The amount of plasma cells in my bone marrow is 20-30%, down from 80% when I was first diagnosed. While both those are positive results, it's not as low as the medical team had hoped. Normal for both of those is below 1 for the M-spike, and 2% for plasma cells.
So tomorrow morning at 9:00 a.m., I'll check into UW Hospital to begin the 5-day course of continuous chemotherapy mentioned as a possibility in the last entry. We were told that this will result in the white blood cell count plummeting, feeling sick like a bad flu, cause mouth sores and make my hair fall out. The great news, though, is that it will also kill those plasma cells that are still too plentiful in my bone marrow. On Saturday, the plan is that I'll start getting the growth factor shots to mobilize the stem cells!
After my blood counts recover the stem cells will be extracted then on to transplant. When will that be? Whenever my blood counts recover (date unknown, but the average time that takes is around 30 days). Yes, it's scary. But I'm glad that I can get this done now, rather than having a week or so to dread it. It's not getting done as quickly as I had hoped or would like, but we're moving forward! We'll keep you posted. Geoffrey will attach a picture of me with my new no-hair-do when that happens. Maybe even with the 2 of us! So stay tuned! Thank you all for your continued prayers and healing thoughts. I so appreciate all of you.
Peace!
After the chemotherapy I've had to date, the monoclonal protein (or M-spike: a marker for multiple myeloma) is at 1.4, down from 8.9 when I was first diagnosed. The amount of plasma cells in my bone marrow is 20-30%, down from 80% when I was first diagnosed. While both those are positive results, it's not as low as the medical team had hoped. Normal for both of those is below 1 for the M-spike, and 2% for plasma cells.
So tomorrow morning at 9:00 a.m., I'll check into UW Hospital to begin the 5-day course of continuous chemotherapy mentioned as a possibility in the last entry. We were told that this will result in the white blood cell count plummeting, feeling sick like a bad flu, cause mouth sores and make my hair fall out. The great news, though, is that it will also kill those plasma cells that are still too plentiful in my bone marrow. On Saturday, the plan is that I'll start getting the growth factor shots to mobilize the stem cells!
After my blood counts recover the stem cells will be extracted then on to transplant. When will that be? Whenever my blood counts recover (date unknown, but the average time that takes is around 30 days). Yes, it's scary. But I'm glad that I can get this done now, rather than having a week or so to dread it. It's not getting done as quickly as I had hoped or would like, but we're moving forward! We'll keep you posted. Geoffrey will attach a picture of me with my new no-hair-do when that happens. Maybe even with the 2 of us! So stay tuned! Thank you all for your continued prayers and healing thoughts. I so appreciate all of you.
Peace!
Thursday, May 20, 2010
Oh My! What Just Happened?
About thirty minutes after the last post was published, we met with our medical team. The tests results were in and looked very good, except for the bone marrow test results, which were expected to be ready by Friday or Saturday. The bone marrow test results will provide the final data that will give the team a complete picture of my cancer status and will dictate the final recommendation for the next treatment regimen. Dr. Fero shared with us that my cancer protein level was currently at 1.4 again. To get it as close to zero as possible, my medical team is seriously considering using an aggressive chemotherapy protocol based on what they think the bone marrow test results will reveal.
What does that mean? I would be admitted to the University of Washington Medical Center for five days, receive the aggressive chemotherapy treatment and be monitored 24/7 in the hospital.
When will this happen? We will find out on Monday, May 24, during another planning meeting with our medical team when we will receive the results of the bone marrow test.
What does this mean for the stem cell transplant? That would postpone that step in my treatment for thirty to forty days after my hospitalization so that the aggressive chemotherapy can dissipate from my body and allow the stem cell extraction chemotherapy to act unhindered.
How do I feel about this? I am very surprised and overwhelmed with this news. I also want to get this process over with so I can get on with my life. I trust God's wisdom and His love for me. I know that HE has blessed me with the best medical professionals to treat this specific cancer. Therefore, "Lets get it done! Lets move forward and do what is necessary for the ultimate victory. After all, I have a lot of living yet to do!"
What does that mean? I would be admitted to the University of Washington Medical Center for five days, receive the aggressive chemotherapy treatment and be monitored 24/7 in the hospital.
When will this happen? We will find out on Monday, May 24, during another planning meeting with our medical team when we will receive the results of the bone marrow test.
What does this mean for the stem cell transplant? That would postpone that step in my treatment for thirty to forty days after my hospitalization so that the aggressive chemotherapy can dissipate from my body and allow the stem cell extraction chemotherapy to act unhindered.
How do I feel about this? I am very surprised and overwhelmed with this news. I also want to get this process over with so I can get on with my life. I trust God's wisdom and His love for me. I know that HE has blessed me with the best medical professionals to treat this specific cancer. Therefore, "Lets get it done! Lets move forward and do what is necessary for the ultimate victory. After all, I have a lot of living yet to do!"
May 1-19: Progress Continues
Janell has been going through a series of tests here at Seattle Cancer Care Alliance (SCCA). Her blood counts, liver functions, lungs, dental, cardiac and cardio functions are strong and optimum. The numerous blood draws are much easier for her with her Hickman catheter.
Every day that catheter has to be flushed. It is amazing to watch nurses doing that process over the last three weeks expertly and now say to you, "This is how you do it since you will be responsible for flushing her daily." The degree of sterility in carrying out the process is an awesome responsibility and an extreme practice in concentrating.
Think about how many surfaces you touch after washing your hands. You touch the soap, scrub your hands, rinse turn off the faucet, dry your hands on a fluffy terry cloth towel, touch your eyes, nose or mouth, open the restroom door, touch your neck to scratch an itch, and then sit down to flush your loved one's catheter. You re-contaminated your hands on the terry cloth towel, when you touched your face, touching the door knob and when you scratched that itch. That was an eye opening revelation for me.
We have paper towels in strategic locations in our home and hand sanitizer everywhere. Janell likes the lavender scented hand sanitizer so she can smell when it has been used. When I prepare for the performing flushing process, I use hand sanitizer, get the box containing the supplies out, spray the top and handle of the box, and set out paper towels. Then I wash my hands, dry with paper towels, walk to the table with my hands up like you see doctors doing after they scrub. I get the different flushing syringes out, and the alcohol wipes. I then use hand sanitizer again and start the flushing process which is actually very straight forward. First you clean the tubing and tip of the catheter that is dangling outside the body with alcohol wipes, open the saline rinse syringe and push the contents into the catheter and then open the heprin syringe and push its contents into the catheter. That's it!
It is amazing the amount of trust Janell has in me to be clean and not introduce any factors that will cause infection. I take that responsibility very seriously and am committed to do my very best.
Every day that catheter has to be flushed. It is amazing to watch nurses doing that process over the last three weeks expertly and now say to you, "This is how you do it since you will be responsible for flushing her daily." The degree of sterility in carrying out the process is an awesome responsibility and an extreme practice in concentrating.
Think about how many surfaces you touch after washing your hands. You touch the soap, scrub your hands, rinse turn off the faucet, dry your hands on a fluffy terry cloth towel, touch your eyes, nose or mouth, open the restroom door, touch your neck to scratch an itch, and then sit down to flush your loved one's catheter. You re-contaminated your hands on the terry cloth towel, when you touched your face, touching the door knob and when you scratched that itch. That was an eye opening revelation for me.
We have paper towels in strategic locations in our home and hand sanitizer everywhere. Janell likes the lavender scented hand sanitizer so she can smell when it has been used. When I prepare for the performing flushing process, I use hand sanitizer, get the box containing the supplies out, spray the top and handle of the box, and set out paper towels. Then I wash my hands, dry with paper towels, walk to the table with my hands up like you see doctors doing after they scrub. I get the different flushing syringes out, and the alcohol wipes. I then use hand sanitizer again and start the flushing process which is actually very straight forward. First you clean the tubing and tip of the catheter that is dangling outside the body with alcohol wipes, open the saline rinse syringe and push the contents into the catheter and then open the heprin syringe and push its contents into the catheter. That's it!
It is amazing the amount of trust Janell has in me to be clean and not introduce any factors that will cause infection. I take that responsibility very seriously and am committed to do my very best.
Thursday, May 6, 2010
March 11-April 30- The Short Version!
Yes! We are covering a large chunk of time in a short space.
At Cascade Cancer Center it felt like we were coming home to familiar faces and caring people. My cancer treatment became aggressive with me getting interveinous treatments on a twenty-one day cycle. The goal has been for me to go through three cycles and then see how things are going.
My cancer chemo treatment includes : dexamethazone, doxol and velcade. The doxol is given once in the twenty-one days cycle which is great! It takes an hour for the chemo to be administered. During that time I must keep my bare feet and bare hands on ice in order to prevent blistering and peeling on the bottom of my feet and on the palms of my hands. I appreciate Geoffrey showing movies on his laptop during that time to get my mind partially off of my discomfort.
I had a powerport inserted into my right chest with a tube going through a large vein and stopping right above my heart. This device is used to administer the chemo and to extract blood samples. My arm and hand veins are thankful since they have all decided to collapse and not allow blood to be extracted for the needed blood samples. I like the convenience of the powerport except for the on-going infection in that area that has lasted for about 3 1/2 weeks. In fighting the infections, another a whole laundry list of drugs were added to my regimen of stuff to take. Actually this can be seen as a weight reducing regimen since one can fill up with water and drugs and not have room for food.
I have also spent about three visits in the hospital on weekends to chemo treatment and emergency examinations due to reactions to the infection or to the drugs fighting the infection. After a couple of specific chest x-rays, a blood clot was found in my upper chest. Why did a clot appear? Apparently my body didn't appreciate the powerport being inside my body, attempted to get rid of it, fought with all of its natural mechanisms available and created a blood clot in the process. It is not life threatening, and is being treated and monitored closely. That also means I have more drugs to add to my diet.
Dexamethazone is a steriod drug that works in tandem with the other drugs. I receive that four times within each twenty-one days cycle. That also translates into "Super Woman" since I am not able to sleep, can clean the house, cars, weed the garden and bake four loafs of bread overnight. Needless to say, in the morning my super powers have vanished and I become a mere tired (actually exhausted) woman ready to sleep for a week.
I do thank God for His mercy and grace in helping me day by day through this journey. I also deeply appreciate all of your prayers, love and concern. May God richly bless you all.
At Cascade Cancer Center it felt like we were coming home to familiar faces and caring people. My cancer treatment became aggressive with me getting interveinous treatments on a twenty-one day cycle. The goal has been for me to go through three cycles and then see how things are going.
My cancer chemo treatment includes : dexamethazone, doxol and velcade. The doxol is given once in the twenty-one days cycle which is great! It takes an hour for the chemo to be administered. During that time I must keep my bare feet and bare hands on ice in order to prevent blistering and peeling on the bottom of my feet and on the palms of my hands. I appreciate Geoffrey showing movies on his laptop during that time to get my mind partially off of my discomfort.
I had a powerport inserted into my right chest with a tube going through a large vein and stopping right above my heart. This device is used to administer the chemo and to extract blood samples. My arm and hand veins are thankful since they have all decided to collapse and not allow blood to be extracted for the needed blood samples. I like the convenience of the powerport except for the on-going infection in that area that has lasted for about 3 1/2 weeks. In fighting the infections, another a whole laundry list of drugs were added to my regimen of stuff to take. Actually this can be seen as a weight reducing regimen since one can fill up with water and drugs and not have room for food.
I have also spent about three visits in the hospital on weekends to chemo treatment and emergency examinations due to reactions to the infection or to the drugs fighting the infection. After a couple of specific chest x-rays, a blood clot was found in my upper chest. Why did a clot appear? Apparently my body didn't appreciate the powerport being inside my body, attempted to get rid of it, fought with all of its natural mechanisms available and created a blood clot in the process. It is not life threatening, and is being treated and monitored closely. That also means I have more drugs to add to my diet.
Dexamethazone is a steriod drug that works in tandem with the other drugs. I receive that four times within each twenty-one days cycle. That also translates into "Super Woman" since I am not able to sleep, can clean the house, cars, weed the garden and bake four loafs of bread overnight. Needless to say, in the morning my super powers have vanished and I become a mere tired (actually exhausted) woman ready to sleep for a week.
I do thank God for His mercy and grace in helping me day by day through this journey. I also deeply appreciate all of your prayers, love and concern. May God richly bless you all.
Friday, April 23, 2010
What's Happened Since the Last Posting?
March 5-10 Seattle Cancer Care Alliance
Janell had daily blood draws, bone marrow biopsy, gynecology visit, x-rays, scans, more blood draws, nutrition visit, dental visit and more blood draws besides the routine daily blood draws.
Goal: To get ready for the stem cell extraction, major chemo dose and stem cell re-introduction at the beginning of April.
Results: The cancer protein level started rising from1.4 to 1.7. Janell’s doctor at Seattle Cancer Care Alliance pointed out that Janell’s labs were great but it appeared she was in an unstable remission. He indicated that he would like for her to go back to Cascade Cancer Center to have her doctor, Jane Golden, continue with a regimen to lower the cancer protein as close to zero as possible.
Our Response: Yes, it makes sense to have the body in the best possible condition before proceeding with such a complex procedure. The shock was paramount since psychologically and realistically we had prepared for this major step in the journey. Now we are faced with a delay of that step two to four months.
Stay tuned for the late update for March 11-31!
Janell had daily blood draws, bone marrow biopsy, gynecology visit, x-rays, scans, more blood draws, nutrition visit, dental visit and more blood draws besides the routine daily blood draws.
Goal: To get ready for the stem cell extraction, major chemo dose and stem cell re-introduction at the beginning of April.
Results: The cancer protein level started rising from1.4 to 1.7. Janell’s doctor at Seattle Cancer Care Alliance pointed out that Janell’s labs were great but it appeared she was in an unstable remission. He indicated that he would like for her to go back to Cascade Cancer Center to have her doctor, Jane Golden, continue with a regimen to lower the cancer protein as close to zero as possible.
Our Response: Yes, it makes sense to have the body in the best possible condition before proceeding with such a complex procedure. The shock was paramount since psychologically and realistically we had prepared for this major step in the journey. Now we are faced with a delay of that step two to four months.
Stay tuned for the late update for March 11-31!
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