South, not quite to the border

On Tuesday morning, I was able to schedule an appointment with an ENT doctor. His office would not schedule a CT scan until after he had seen me at the appointment. In order to do a culture I needed to be off antibiotics for at least one week. Consequently, the appointment was scheduled for Monday, January 12. I passed all this info along to my oncology nurse here in Redding.

Steve was leaving Tuesday morning to drive to southern California to attend the funeral of a relative and since I wasn’t in treatment and had no appointments for the week and my blood counts had come up enough to be around people, I quickly packed and went with him. I was even able to help drive for a short time. It felt really good to get away even though the purpose was to say good bye to a wonderful man who had lived a long, productive life, and who had such a positive influence in so many lives. The day after the funeral, we were able to visit my dad whom I hadn’t seen in 2 years. He’ll be 92 this month and certainly isn’t as strong as when I last saw him.

I received a phone call on Thursday morning from my oncology nurse in Redding to tell me my hematologist had gone ahead and scheduled the CT scan and it would be done at 7:30 Monday morning. I am to take the film with me to the appointment with the ENT doctor. Also, he had talked to my doctor at Stanford and he agreed that my sinus problem needed to be dealt with before I had more treatment. Not knowing what next week will bring after the appointment on Monday, we decided we’d better head home on Friday and get some things done, such as put the Christmas decorations away and clean house.

The pain in my legs from the neuropathy was more intense most of the week and I would have sharp, shooting pains in my feet from time to time. It would keep me awake at night, and during the day, I would try to just keep smiling, but I would get quiet, as my brain would fog over from the pain. It wasn’t as bad on Friday while we were driving home, but the bottoms of my feet felt really hot. I do have a prescription now for medication if the neuropathy gets any worse. My legs were still pretty weak and wobbly most of the week and I had to walk slowly and carefully and made sure if Steve’s arm wasn’t available, there was something to hold onto. By Friday afternoon, though, I felt I was beginning to gain some strength in my legs. The weather is clear and the temperatures will be in the 60’s for several days, so I’m hoping I can start walking a little and further gain some strength. My hands are still quite tender and an itchy rash has developed.

Please pray that whatever the ENT doctor finds can be easily remedied so I can finish my treatments.

Treatment suspended for now

I am happy to report that many of the side effect issues are beginning to lessen. My hands are in much better shape after using a prescription cortisone cream. The rash on my body is almost completely gone. The pain and cramping in my legs is infrequent and minimal. The doctor did prescribe a medication for me today for the neuropathy pain, but it may not be needed at the present time.

It was decided at my doctor appointment today that my treatment is suspended until my sinus problem is dealt with. The next step is an appointment with an ENT, CT scan of my sinuses and a culture done to determine whether I’m dealing with a bacterial or a fungal infection. As I’ve stated before, not only chemotherapy but also high-dose steroid treatment puts me at risk for fungal infections. (I do have several spots on my body that are developing a fungal rash again.) My local hematologist is concerned that I might be dealing with a fungal infection in my sinuses since it has not responded to all the antibiotics and actually seems to be getting worse.

The results of the Free Light Chain test done last week were available today. It shows that my free light chains are still actually below the normal range, which hopefully indicates that the cancer is under control for now. I am hopeful that my immunoglobulin panel will show further recovery when it is repeated sometime in the next few weeks.

My local doctor will be talking to my Stanford doctor tomorrow morning to discuss what is next: will the 6th cycle of treatment be completed when my sinuses have cleared up; will 5 cycles be adequate for now; should a stem-cell transplant be considered and stem cells harvested now while the cancer load is reduced? I’ll post again when I hear from my local doctor.

Thanks for your many prayers this week. When you pray for the immediate issues, it gives us such encouragement to see His hand at work in response to those prayers.

Another year begins

Another year rolls around and with it we hope will be improved health for me. Side effects have really accumulated, leaving my week off treatment a struggle. Weakness and neuropathy are increasing and spreading, and one wonders how you can be numb and in pain at the same time. The pain from neuropathy does not respond to ibuprofen or any other type of analgesic. It only responds to medications that are specifically designed for nerve pain; medications that I don’t have as yet. The weakness in my legs is what I notice the most as it is difficult to stand up from a chair or to climb stairs, which we have an abundance of in our home. As long as I don’t stand for too long, I can walk on a level surface successfully, so am able to make the long walk from the parking lot of the hospital to the infusion center and am able to continue to help with a little grocery shopping. My vision has become somewhat blurry and I have a rash that developed last week and am grateful it doesn’t itch. My hands are red, raw and have sores. Cortisone cream and other hand creams for dry skin have helped some, but Steve has to be my hands for anything that requires any kind of pressure; such as unscrewing a cap or opening a bottle or taking the lid off of something. My sinuses continue to be a problem and my voice is now hoarse. The question is whether this is chemo related or a separate problem that has developed due to my impaired immune system. Also, is the inability to smell or taste from chemo drugs or the chronic sinus infection? I’ve been on several different antibiotics and it has helped some, but hasn’t completely cleared up the problem.

Usually, during my week off, I really perk up. However, that has not been the case this time and my local oncology nurse has been in touch with my oncology nurse at Stanford. As a result, on Monday afternoon when I see my local hematologist, we will talk by phone with my Stanford doctor and “come up with a plan”. So, things are a bit up in the air regarding what is going to happen next. I don’t know if I will begin the final cycle of treatment on Tuesday, or whether there will be a delay or…..???

My blood counts were low this week. In fact, my neutrophils (the infection fighting white blood cells) were the lowest they have ever been. This has required 2 neupogen shots to force my bone marrow to make more. My doctor said my neutrophils were so low, that I was susceptible to an infection from my own bacteria. How’s that for scary?

When we hear people say “We’re praying for you” we are reminded of the Spiritual network we share as Christians and the comfort and strength we receive as a result of all those prayers.

The Comfort of the Cross

I hope everyone had a blessed Christmas! We had a wonderful time with our family even though I was dealing with side effects from treatment. I had to remember what food really tasted like as I ate each bite and hoped my stomach would handle it all. I missed out on a roaring game of “Mad Gab” as I fell sound asleep in my recliner just as the rest of the family was beginning to play. Do I even need to say that our 13-month old grandson, Ty, was the center of attention! He delighted and entertained us all!

When I returned home from treatment on Tuesday, I was surprised by about 20 of my choir students from Red Bluff who came and sang Christmas carols. It was so touching, heartwarming, and gratifying to hear their beautiful voices and observe them sight-singing their part from a carol book! The best medicine for a teacher! Jen was baking gingersnaps when they arrived and we were able to offer them cookies and hot chocolate for their labor of love.

I have had a great deal of difficulty coming off the steroids this time. The side effects began within 24 hours and a week later they have not completely subsided. My blood work on Tuesday showed some evidence that my liver is reacting a little to the steroids. Nothing serious…..just something more to watch. My other blood counts were good. An immunoglobulin panel was done a week ago and it showed that there is beginning to be a little recovery! I still need to have another immunoglobulin G (IVIG) infusion done, but I have been able to go 6 weeks between infusions this time instead of the usual 4 weeks. We are so thankful for these signs of progress.

Yesterday was the last treatment of this cycle and I am really looking forward to my week off treatment and the opportunity for a little normalcy. One more cycle of treatment and then a biopsy to see where I stand in this battle.

The infusion center I now use for my treatments is located in the Catholic hospital. On the wall in the infusion suite is a crucifix. How comforting it is to have that reminder there before your eyes as you face a life threatening disease. The catholic cross, or crucifix, has Jesus on the cross; a reminder of His sufferings and the fact those in treatment are sharing in those sufferings. The Protestant cross is empty; a reminder of His mercy and hope for our future in that He has gone before us. Although everyone was very kind at the other hospital, the entire atmosphere is different here. You feel God’s Spirit and peace the moment you enter the building. My hope is in the Christ of Christmas and I know that I have an eternal life with Him as my hope for the future. However, I was very thankful that I am still here on this earth and could enjoy my family as we celebrated Christmas together. My thoughts, though, were also with those of our families who have empty places at their Christmas table this year as loved ones are missing from this earthly life. My trails and sufferings are my reality right now, but I know others have suffered far greater trials.

Thank you for your continued prayers, and the Christmas cards and letters we have received.

Treatment cycle 4 begins

A lot has happened since my last post so I will try to briefly catch up.

I did go ahead and have a port inserted the day before I was to begin the third cycle of treatment. The procedure itself went smoothly, but when they went to access it the next day it wouldn’t work. It was most uncomfortable having them jab it with what looked like a giant thumbtack, which was done 3 times thinking they hadn’t gotten in the right spot. I was sore from the procedure the day before and I was having an allergic reaction to the tape that was to stay over the sight for several days. A trip to x-ray and a look at the sight with a fluoroscope showed the tubing had looped right above the port restricting the ability of anything to flow either in or out. The radiologist at the hospital said I needed to wait a week and let some healing take place before they tried to manipulate it back in place. If that didn’t work, they would have to open me up again and fix the problem. So, back to poking at veins again. Another uncomfortable procedure the next week, but they were able to successfully manipulate the tubing back into place. However, the radiologist did tell me that it could happen again.

Okay….so now we have the port working, although my skin is in bad shape from the reaction to the tape. The next crises is a little bigger. The only facility in town that was carrying the chemo drugs that Stanford had ordered for me was Shasta Regional, so I was receiving my treatments there. Most of you who live in the area know that Shasta Regional was purchased by another corporation at the 11th hour in their bankruptcy and impending eviction for non-payment of their lease. The news hit the papers on a Friday morning and on Monday morning the new owner started canceling contracts with insurance companies. Of course, this all happened in the middle of my treatment cycle! My insurance company advised me that I should get the remaining treatments at a facility where I knew the contract wouldn’t be cancelled the day I might be receiving treatment, as I would then be financially responsible for the cost. So, after a lot of additional phone calls and lots of prayer, we were able to get appointments set up at Stanford for my remaining two treatments of cycle 3. It was a grueling week as we made two trips to Stanford, going down and back the same day.

So, cycle 3 was successfully completed but not without repercussions from the extra stress. I ended up with a really bad sinus infection for which I was put on really strong antibiotics for 10 days. That caused a yeast infection to set in affecting all the areas where my skin was already reacting to the chemo drugs and was red and peeling. Oral and topical medications were prescribed for this and I was awarded an additional week off treatment while both were treated.

Today I being cycle 4 of treatment and we are grateful that Mercy Hospital has agreed to carry my drugs and will now administer my treatments. However, the infusion center will not be open the day after Thanksgiving, so we will have to drive to Stanford for treatment one more time. I have been assured there won’t be a problem at Christmas and New Year’s.

Now to the news you are really looking for – what’s happening with my cancer. The most recent report shows there is a good response to this treatment. The response is showing a much more successful outcome can be expected than was achieved with the treatment last year.

We look forward to having all of our children and their families with us on Thursday as we celebrate Thanksgiving. This year we are especially thankful for the success that is being achieved with my treatment and for all who so diligently pray for us during this difficult and trying time.

Round 3 begins

I have completed two cycles of treatment now, and I am happy to report that some of the side effects have become less debilitating. On Tuesday, I saw my doctor at Stanford and on Friday we received the report that there has been good progress in reducing my cancer load. In fact, the numbers were better than was achieved with the drug I was on last year! As of last Tuesday, I am to have 4 more cycles of treatment and then another bone marrow biopsy. So, if there are no interruptions, I will complete treatment by the middle of January; have my bone marrow biopsy and see my Stanford doctor by the middle of February for the results.

There has been great difficulty with accessing my veins for treatment. The worst day was 7 tries by 3 different nurses! It was grueling. So, on Monday I am having a port inserted which will make everything much easier. I’m still a little uneasy about having a tube constantly accessing a vein above my heart, but I have been assured there is a minimal risk of blood clots or infection. With the improvement of my health, I am now actually in better shape to have the port inserted than I was before I began this treatment. The nurses at the infusion center told me that ports have revolutionized cancer treatment. Not only are the chemo drugs very hard on the veins, they are also very damaging to the body if they get outside the veins. By having access to a much larger vein that the port will supply, the drugs are more diluted as they enter the body.

I’m just finishing up my week off treatment and will begin the next cycle on Tuesday. I’ve been feeling quite good this past week. It’s been a really long time, probably years, since I’ve felt this good. I’ve been able to get out and walk 1 – 1 ½ miles every day. I won’t be able to do that this next week due to treatment, but will be able to start in again during the second week of treatment and slowly work my way back up to that distance as I start recovering.

Thank you for your continued interest in my life and especially for your prayers.

First Cycle of Treatment Successfully Completed

My 10-days off of treatment have come to an end and today I began the second cycle of treatment. By the 4th day during the rest period, I was feeling pretty good and continued to gain strength and energy each day. However, my white blood count did drop very low on the 4th day during the rest cycle and I had to go into the hospital 3 days in a row for shots that would force my bone marrow to make more white blood cells and then another trip to the hospital for another blood test to know where the blood counts were following the shots. My platelets had also dropped below normal, but they have recovered quite well now on their own. As treatment continues, it will become more difficult to maintain adequate blood counts; however, my local doctor has assured me he will use every resource available to aid my body in producing or replacing what is needed to keep me going in treatment. This is very reassuring to me.

In addition to your faithful prayers for healing and restoration of my health, please pray for some specific needs while I’m in treatment: 1) that my veins will hold up through all the infusions; 2) that they can easily access my veins with a minimum of pain (they are using the veins on the backs of my hands, along my wrists and forearms); 3) that my body will adjust and the side effects will minimize.

I miss you all and do thank you for the emails this past week. Your kind words and encouragement are greatly appreciated!