The Next Mountain to Climb

While we don’t have a lot to say, it’s going to be at least a few weeks yet before Kristi’s next full body scan, so I thought I’d send a little update.  Last Tuesday Kristi had an MRI focused only on the tumor(s) on her vertebrae. This was in preparation for a Cyberknife (directed radiation therapy) she had on Friday.  The MRI showed significant growth of the tumor(s) on her spine. This makes us anxious for the full body scan that is not yet scheduled.  The Cyberknife procedure was not too difficult, and the side effects seem less that we were expecting. Although, she says it feels like someone hit her on the back with a bat and she is a little more fatigued than usual.  The goal for this procedure is pain reduction. The general consensus now is that her regular “back pain” must be from these tumors. If this procedure doesn’t have any pain relieving effects, she will be having a different treatment from a Stanford pain specialist in the near future.  We just hav...

Well, the journey continues. I recently had a full body MRI and Jim and I were able to discuss the results with my sarcoma specialist a couple of days ago. The good news is that, while there has been some slight growth across all the tumors, most of those in my lungs have only grown slightly. The doc actually termed those tumors “fairly stable.” So, great news because lung mets are inherently dangerous, especially if they’re quickly growing.  Less fortunately, we learned that the tumors on my lower vertebrae are growing faster than desired. In an effort to slow or even shrink them, the doc is ordering radiation therapy. I have a consultation with the neurosurgeon and interventional radiology next week, after which the treatment will be scheduled. We are hopeful that it will only be one or two rounds, but that will be determined after more scans, of course.  In addition to the radiation, I will continue taking my daily chemotherapy tablets at home. At this point, the doc is alr...

This post is just to say that there is little to report.  We are waiting for a scan next month and continuing to manage pain. Recently, weight loss has become an issue, too much that is.  Spring is here in Central CA and this weekend is Rail Fest at Hillcrest. It’s very cool to have this small scale railroad right here in Reedley. We took Sage and Jamie to try out their newly expanded routes. 

In Macbeth, Shakespeare wrote, "Give sorrow words. The grief that does not speak whispers the o'er-fraught heart and bids it break." This is why we blog. Yes, it's a great way to share information with everyone who cares to know. But it is the processing of our grief that it manifests its greatest power. There is not much to report right now. I am back on the chemo pill called Votrient. It's main side effects (for me anyway) are fatigue and it causes hair to turn white. A bed and hair dye are easy remedies. I'm taking a walk almost daily; usually a couple miles at a time. It's not my mileage of the past, but I'm happy for every step. Between my naps I'm feeling pretty good, enough to be productive around the house little bit, important for my sanity. The elusive pain is omnipresent, but drugs and movement help a little.

The month following Christmas has been a little bit of a roller coaster ride. The absence of Dr. Ganjoo – Kristi’s primary oncologist who has been out for her own personal family reasons – has caused some confusion and frustration. We aren’t complaining, it is just the current reality. Thankfully, her proxy, Dr. Bui, has been able to step in and provide some guidance. Pain update: The pain management team has increased her pain meds – we learned that her previous dosages were pretty low. The increase has helped a little, emphasis on little. Treatment update: At the end of November, Kristi stopped Votrient. She was actually quite sick with a respiratory infection; her doctor wanted her to fully recover from that before any further treatment. The last time we spoke with Dr. Ganjoo we thought she would start a new drug and immunotherapy. Remember, we were confused about beginning the Yondelis three weeks ago? Yondelis can work to slow down disease progression, but unfortunately, Kristi’s ...

Our last post was mostly a chance to say Merry Christmas. We were very ambiguous about treatment, etc. — partly because we weren’t sure and partly because we were enjoying the break from treatment and didn’t want to think about it too much. We have more to say today. 😁 Yesterday, I had an appointment scheduled with my Fresno oncologist — he provides infusions and blood work checks for Stanford, saving us some time and driving. We thought this was a check up and discussion about the next steps for treatment. Imagine my surprise when he told me that I would head to the infusion room to start treatment as soon as he finished his checkup!  The current treatment plan is multi-faceted. Every 3 weeks, I will see him in Fresno for a rather extensive set of bloodwork. The new regime has the potential for some negative side effects in the liver, kidneys, and GI tract, so they will be monitoring those functions quite closely. As long as the bloodwork comes back in acceptable levels, I’ll hea...

Just wanted to say Merry Christmas to everyone!  At this time of year especially, we count our blessings, of which we have many. Each and every one of you are high on that list. Your caring, support, and love is felt on a daily basis.  We just got back from a trip, a cruise. It was very nice. And, we are very happy to be home, just to be with those who are most important to us.  Kristi will be starting some kind of new treatment next week or very soon. While she did fairly well on the trip, the ambiguous pain that affects her is constant.  If there is anything we pray for and need prayers for is relief from it. They may again be reevaluating her medications and adjusting. While having cancer is one thing, suffering from it is worse.  Tamales tonight!  Feliz Navidad y Prospero Año Nuevo! Here are a few pics from our trip:

Kristi had her regular checkup with Stanford Oncologist yesterday. After Christmas she is going to start Kristi on and immunotherapy infusion and maybe have her stay in a low dose of the pill she’s been on.  Right after a Thanksgiving Kristi had influenza A which was pretty bad. She’s fully recovered from that but it’s been hard to tell if going off the chemo pill had much effect on her drowsiness. Maybe some.  We are headed out of town for two weeks. Got an amazing deal on a cruise so changed out road trip plans. Merry Christmas everyone!

We haven’t posted for almost a month because there has been little to say. Kristi is still dealing with back pain and a lot of fatigue from the chemo. She has also had a cold/infection for a couple of weeks.  She met with her oncologist today for a check up. The doctor was very concerned  that she is not getting over the cold.  Doctor wants Kristi to go off the chemo pill for a couple weeks and take a strong antibiotic. In addition to knocking out the infection, we will see just how much fatigue the chemo is causing.  After the antibiotics and break from chemo, the doctor wants to start her on an immunotherapy with a low dose of the current chemo.  After much deliberation, talking with doctors, and meeting with STRS, Kristi has begun the application process for Disability Retirement.  Thank you for the continued thoughts and prayers. 

Hope and reality are not mutually exclusive. I think we live in a world where people may sometimes not want to face reality and sometimes don’t have any hope. I find great comfort in embracing both. Many things give me HOPE — God, my family, my friends, the mountains (especially Switzerland), and many more.  The REALITY is that my time on earth is much more limited than I had ever hoped it would be at 52 years old.  Swiss Alps, 2005 You’ve heard us praise Stanford, their care is top notch. As a cancer patient with a terminal illness, they provide so much more than medical care for me. I have regular appointments with social workers who help me (us) through this difficult journey. Our most recent was Monday morning. Their caring guidance is the impetus for this post.  LMS is NOT curable. Statistically speaking, just 14% of people live 5 years after a stage 4 diagnosis.  I have metastases to my lungs, skin in multiple areas, lymph nodes, and sinuses, that we know ...

We have some pretty good news after talking to my doc at Stanford.  My most recent scans showed that most of the tumors are stable.  There has been slight growth on some and slight shrinkage of others, but most are stable.  So the chemotherapy is working.  However, the fatigue I’ve been experiencing is definitely a side effect of the treatment.  In order to get the fatigue under control, I am going to take a lower dose of the drugs for the next month. If that helps with the fatigue, maybe I’ll be able to return to more normal life, most specifically the ability to return to work.  However, even if the fatigue improves, I will have to get more scans done to see if the lower dose has the same effect on the tumors.  So, overall, the news tonight is good.  I will be having an MRI of just my head tomorrow; the full body MRI does not get great images of the head; I have a couple spots that they want to be more clear about. And, Monday I will have a smal...

Hi all. Jim and I realized that we haven’t sent out an update in quite a while. There have been a few changes to my situation since the last one. First and foremost is that fact that we originally said that I didn’t really have many side effects with the current chemo regimen. Perhaps we jinxed it when we wrote that… Not long after we sent out that little nugget, it got hit with pretty bad fatigue. It’s daily, and some days are even worse than others.  Fatigue, for the uninitiated, is not just a sense of tired. In my experience, it’s a full-body phenomenon. When the fatigue “hits” me, it’s like all of my muscles hit a wall and just have zero energy to give. I can be having a fairly decent morning, but when the fatigue comes, everything grinds to a halt. All I can do is sleep at that point. Some days, the fatigue waits until 11:00 am or so to kick in. Then I spend several hours asleep, or at the least, lying down because I can’t do anything else. Other days, I get so far as pouring ...

About three weeks ago we posted and Kristi told you that she’d be starting two chemo-like therapies, one for the sarcoma and one for the lymphoma. And she had just begun a drug that was supposed to help with nerve pain. For those of you interested in details: Rituximab: an infusion for the lymphoma Votrient: pills taken daily for the sarcoma Cymbalta: a drug used mostly for depression but also prescribed for nerve pain, often for osteoarthritis or fibromyalgia As far as the pain, the Cymbalta has had little effect. They told her to give it three to four weeks, but her pain has not subsided at all.  She also began the Votrient, increasing the dose each week. She will get to four pills per day and then possible back off to fewer depending on side effects and effectiveness. The side effects of the Votrient are not too bad. If you look them up, she deals with the basic ones to some degree. The biggest side effect though is fatigue — and we’re not totally sure if the fatigue is from sev...

It’s been a while since our last update. Jim and I took a fantastic vacation in June. We are both thankful that the doctors agreed to a short break from treatment in order for us to go. While we did have a great time, I was experiencing pain on a continual basis. Just in recent days I told Jim that it seems to be slightly worsening. It’s hard to tell exactly. Now that we are home I will once again be starting chemo treatments.  I’ll be receiving two different types of chemo. The first is 4 weekly infusions of a traditional style chemo that is meant to target my lymphoma. We had hoped that it would remain stable for many years before needing treatment, but it has decided to rear its ugly head in the last few months. Hopefully, this treatment will knock it back into submission. The second is a daily tablet that I will take at home. This one is meant to target the sarcoma. The chemo I had this spring was somewhat helpful in keeping the tumors in my lungs from growing much, but it didn...

After considering all of my recent scans, my team at Stanford has decided to adjust my treatment plan again. I will be doing a four-week regimen of a monoclonal antibody drug called Rituximab to address my lymphoma, which appears to be rearing its head a little. I will also be starting a different chemo (pill form) to continue to treat the sarcoma. I am going to take a short treatment break to enjoy the month of June. Jim and I will get to have some fun adventures before the treatments start in early July. Before all these most recent treatments, we planned a trip to Portugal. We weren’t sure we were going to be able to go, but made the final decision last week based on what my doctors want to do. We are going! In the meantime, if you’re wondering how I am feeling, I have been riding my bike to work for the past week. I feel great minus the back pain that I always deal with and some fatigue. I tend to nap at lunchtime but that’s OK! Thank you for all the prayers and everyone who checks...