The Next Mountain to Climb

The scans done on Monday showed growth in the lungs that are now able to be biopsied. Of course growth is not great, but this biopsy should be clear information about a treatment option.  It will likely be between Christmas and the new year.  More waiting, we really don’t have more to share at this time. We hope everyone has a merry Christmas!

Since our last post, I have had a biopsy of a small spot on my liver and an appointment with the Leiomyosarcoma specialist, Dr. Ganjoo. The results are not what we suspected.  The good news is that the biopsy did NOT show Leiomyosarcoma in my liver.  It actually showed trace amounts of Lymphoma (remember, I also have a rare, slow growing form of Lymphoma).  Lymphoma is not usually seen in the liver, but the Lymphoma is not really of great concern. The other locations that are of concern are my lungs and the original spot of my Leiomyosarcoma tumor, in the back of the abdomen.  The good news and bad news is that these spots are so small they may or may not be a problem.  The doctor's recommendation is to scan again in six weeks to compare growth, if any, of these spots. We realize this news is somewhat better than we expected, but at the same time still concerning.  We really grilled Dr. Ganjoo today.  We are confident that given the complexity of my he...

It's been almost a year and a half since I had a Leiomyosarcoma removed from my inferior vena cava, a major blood vessel in my abdomen.  Without going into every minute detail, the usual/general post operative protocol is to monitor and see how things go.  The first few scans were unremarkable, and we enjoyed a great year with lots of travel and a 25-mile day hike across the Sierras. About six weeks ago I began having some symptoms that didn't subside and we decided to get in to see Dr. Lemon, my local oncologist. Given my history, an MRI was immediately ordered at Stanford.  We learned that the scans showed several tumors in various locations. The doctors think they are probably metastases of the original tumor. This week I had a biopsy done on one of them to verify and provide a concrete diagnosis. The pathology report should be available by the middle of next week.  Dr. Ganjoo, my Stanford oncologist, one of the World's leading experts on Leiomyosarcoma, will then...

Greetings!  First of all, I am doing great!  I have had no back pain since my most recent surgery, the back pain that took me in to see the doctor several years ago.  Secondly, Stanford has done some genetic testing on me and found that I have a gene mutation that increases my risk for cancers, especially the three types I’ve had. Go figure! Is this good news??? Not really. But it is at least a reason … the why we’ve often asked ourselves.  While each one of my cancers has been a rare type, it is not rare that someone with this mutation gets these rare cancers, and multiple ones at that.  The little bit of good news is that because this has been identified, I qualify for the most thorough type of regular full-body MRI that will now be done on a regular basis.  Back to the best part … we’ve been hiking and traveling … I have no limitations to my physical activity. I have NO PAIN! For you all who love to learn, you can read about the mutation here:  http...

Yesterday, Jim and I once again spent the day at Stanford for scans and post-op appointments. It was a good day with great outcomes.  Based on the ultrasounds they ran, the vascular surgeon told us that my rebuilt artery and vein looked "perfect,” meaning that all blood flow and blood pressure is behaving as hoped and there’s no evidence of blood clots. He told me that I can begin adding more extensive activities and exercise back into my life! He said I can start lifting more weight as long as it doesn’t cause pain or discomfort to my incision area. He told us the incision site reaches the strongest it will ever be by 6 weeks which will be this Friday. The one caution he gave is that I should still do core exercises like sit ups “without resistance" for a while. One of my friends found the humor in that with a quick “we don’t like sit-ups anyway!” 😂.  There are still medical considerations, of course. Per the vascular surgeon, I will remain on blood thinners and an aspirin ...

Tomorrow will be five weeks since my surgery. I am doing really well. We had great news from Stanford. The tumor was removed and all the margins were clean. I’ll have several scans next week, but we are hopeful that the results will show no more evidence of disease.  In regard to the incision’s healing, there are still places that are sensitive and a tad painful, but considering the size and scope of it and the surgery, I think that’s to be expected. Every day it feels a little better. Progress! I do still get tired each day, my energy level has been improving. I’ve been taking short walks since the day after surgery, but this morning, I took the longest yet. Jim and I walked a little over two miles!! That might not sound like much, but it really was exciting for me! We wouldn’t have won any speed races, but that’s ok! Being able to sustain that distance, and not have to crash into a nap is definitely a win at this point. My goal is to be back up to an easy six miles by the end of ...

Just a quick update as I sit in the backyard enjoying the morning sunshine: I’ve been home for a few days now. We were both shocked when they discharged me earlier than expected, but also thankful. It’s much nicer to recover at home. As for that, I think I’m doing well. I’m able to (slowly) get up and down the stairs on my own, although Jim is still keeping a close watch in case I need help. I take short walks around the backyard and I sit A LOT. I can make it through a few hours in this way, and then I hit a wall: my body just screams “No more energy!” and I take a 3 hour nap. 😊 Everyone that’s worried that I will “overdue” currently has nothing to worry about. My body won’t let me! This surgery was definitely more involved than my splenectomy two years ago. The incision is longer! Since they had to rebuild those blood vessels, I’ve been told that I can’t lift much for two months. Right now, with the pain and fatigue, that’s easy to handle. In a couple weeks when the incision site is...

This lady got discharged today ... 5 days ahead of schedule! She’s still moving slow and napping, but she’s going to be doing it at home. You know what she told me on the way home ... “I can’t believe how blessed I am.”  How do I deserve a great life companion like her??? She was quite excited and got gussied-up a little for the ride home ... She said she tried to smile with her mouth but she’s defiantly smiling in her heart. 

As is usual with our bad ass friend/wife/mother/daughter, Kristi continues to do extremely well. Of course she still has several pain medications that are flowing continuously, but this is allowing her to get through the worst of the healing process. Nurses both yesterday and today have commented about how well she’s doing. Today she went in two long walks. The first time she went around her unit three times and then later today she went on a walk a few laps around the atrium of the brand new hospital.  Sorry, I forgot to get a picture of the walking. We have and will continue to gush about the level of expertise and care that she receives at Stanford. But yesterday and today we encountered a situation that we think is helpful for people who might be in a hospital in the future. Unfortunately, Kristi has had her share of hospital stays and of course, I’ve been with her during those times. Through experience we’ve learned that while most of the time you need to listen to doctors and...

We can’t say enough about medical professionals in general, but the folks at Stanford Hospital are so great (remember, we have lots of experience).  Of course Kristi had two of the best doctors for what needed to be done (see below), but every nurse, medical assistant, and other staff member have been so great. Her room has a nice view too! Kristi is doing quite well considering the digging around they had to do to get to, remove the tumor, and graft the arteries. She’s on a concoction of pain meds which are going to get her through the next few days and weeks. She’s been able to talk with the kids and is watching Emma play softball between short naps.  No one wants to need the services of the best doctors one can find, but when you need them, it’s such a blessing. These two gentlemen are amazing at what they do, and such nice guys. Big shout-out to them! Dr. Poultcides Dr. Harris Kristi is definitely able to check and respond to texts. Feel free to communicate with her that w...

Surgeon just called me. He said everything "went flawlessly."  They removed the mass and reconstructed both arteries as planned. I have to wait for text but he said I should expect to be able to see her at about 5:30pm ... three hours from now. Thank you to everyone for your continued prayers and encouragement. 

Surgery is set for  this Friday at 7:30am . Jim and I will drive up Thursday, spend the night and report to the hospital  at 5:15am .  It will be about 7-8 hours if everything goes as planned.  We have met with the two surgeons who will take care of things. One will remove the mass and the other will reconstruct (graft, like a heart bypass) the two arteries. It’s always nice when a doctor is both talented and easy to talk to. Both of these surgeons are the best in their particular speciality at Stanford and they both were pleasant, reassuring, honest, and just plain nice.  Both explained that this is a fairly risky surgery, and the vascular surgeon even said today that ten years ago they wouldn’t even do this surgery. Thank God it’s 2021.  Despite the risks, each was very confident in their ability to get the job done.  Side note: As many of you know, we also recently put our house up for sale. We accepted an offer over the weekend and should go into e...

The scans done in the last couple weeks finally made it up to Stanford and we had our first meeting with the surgeon who would like to remove the mass of the lieomayosarcoma. As you might remember, the mass is located in the far back of the abdomen and is attached basically to the vena cava and near the aorta. As the surgeon explained, these are the two largest blood vessels in the body, and therefore make for a delicate and long surgery. Due to its location, they are going to have to remove a piece of both the vena cava and aorta in order to remove the mass. They will then reconstruct those two vessels. The surgery will be done at Stanford and recovery will be about 10 days in the hospital followed by a couple months of recovery at home.  At this point, it looks like this surgery will take care of the leiomyosarcoma.  Let’s hope so.  Gotta love back pain. Without my crazy back pain this mass, and maybe even the Lymphoma, would have gone unnoticed. We are thankful that th...

Kristi had her video call with the Stanford Sarcoma specialist this afternoon; the discussion was quite encouraging. Three things are important to note and share. First, everything she told Kristi will be shared with and confirmed by a team of doctors after a few more scans and tests.  Second,  the doctor is calling the tumor grade 1, which is the lowest (most favorable) grade. She thinks that what appears to be the swollen lymph node may actually be the primary tumor. It is in a very usual location for lieomayosarcoma and adjacent to lymph nodes, which can be confusing. She thinks that a surgeon can get in there and remove the tumor, possibly eradicating the cancer completely.  Third, she thinks, based on her review of Kristi’s past tests, that the back pain may simply be a ruptured disk in her lower back (which the Fresno doctor saw but said shouldn’t be causing her that much pain). She is going to consult with a Stanford back orthopedist but hopes that a simple surgery...

Well, buckle up for the next adventure. We finally received results from the biopsy that Kristi had done 11 days ago ... a prolonged review of the pathology is never a good sign. They found something that even her doctors seemed very surprised to find. The swollen lymph nodes in her abdomen (near her back) are not lymphoma at all, but yet another type of cancer called Lieomyosarcoma (in addition to Lymphoma; lymphoma is still there, but not a concern as it continues to be relatively stable).  Yes ... we were again shocked beyond belief. In fact, today seems like it’s been a week long.  After recovering from the shock and surprise yourself, you too probably have questions. We don’t have more information yet. Lieomyosarcoma has its own “sub categories” and those have yet to be determined. Nor has any stage been determined. Kristi will likely be scanned and prodded more than she’d like over the next few weeks. She has been referred to the Stanford doctors who handle this kind of ...