Help My Angel, Lois, Beat Cancer!
My Angel and Life-Love, Lois, and I have been together for 40 years, and have always been completely and totally inseparable. In late February 2017, Lois was diagnosed with Stage 4 Colon Cancer, after she started experiencing what we first thought was appendicitis. A CT scan revealed a large (3 inch) mass where the small intestine joins the large intestine (and right next to the appendix).
Subsequent scans have confirmed that there are additional tumors lining the abdominal cavity, but gratefully, not affecting any of the other major organs (liver, kidneys, lungs are clean).
Lois is now undergoing her first chemotherapy treatment. Our oncologist anticipates a 4 month chemo program, with treatment every other week to shrink the cancer as much as possible. After that, major surgery (HIPAC) to clear out the abdominal cavity (removing the colon, appendix, and other linings), recovery, and then another 2 months of a different chemo. In all, we are anticipating between 8 to 10 months for this to take place.
There is strong belief from the oncology team that a cure is possible, and is what we're aimed at. With guidance from her team, we also hope to augment this with holistic and naturopath approaches to help boost her immune system as it will be weakened by the chemo.
As an independent, self-employed photography team, we will not be able to work, or only do so at a minimum as we direct our energy and efforts toward Lois' healing. We are asking for support during this difficult time of transition to cover our basic life necessities and restore Lois' health. When possible, we hope to take on commercial assignments (product shots, architectural, branding, etc.) as time and energy allow.
As her husband and life-love, my immediate and ongoing focus is to provide as much of a positive and healing environment as I possibly can, so that Lois can focus on what it takes to beat this. Lois is extremely strong, upbeat and indomitable, and believes that we will overcome this. I continue to build and nurture her in all ways, physically, mentally, and spiritually, and we both are extremely appreciative of the help, love, and encouragement from the dear people in our lives.
Thank you all for your support.
I don’t even know where to start, but I’ll begin with the week of April 8. I’m documenting everything as carefully as I can for our own record-keeping, and have communicated with our doctors on all this as well. There’s one bit of good news that I’ve put in at the very bottom of this post, but this time-frame has been pretty difficult.
For those of you who have inquired on how my Sweetie is doing, thank you. It’s been very challenging to even find the time to write.
On that Monday we had our first meeting with our radiology team (a.k.a. Interventional Radiology or IR) to find out what the game plan was. This included 4 procedures: Mapping, liver biopsy, treatment #1, and treatment #2.
There were two immediate challenges on the practical side: insurance and scheduling. For the latter, the system being chock-full required our flexibility to jump in anytime an opening became available. At the same time, Lois and I seemed to catch a bug, kind of a light-weight cold. The entire week was one of lethargy for her, and general bleah with a little bit of nausea (which was unusual).
On Thursday, we got a call, and a short time later were getting prepped for mapping. After accessing her port (i.e. connecting tubing to the device that was surgically implanted under her collar-bone 2 years ago; this feeds directly into the jugular, and requires a small needle puncture), they go in through the femoral artery, travel up through that to the liver, and wash it with a very low radioactive dye, and takes lots of pictures. This sets the stage for the 2 future treatments.
It also means a puncture to the groin, and 6 hours of lying down and holding very still, but not unconscious.
Two days later (Saturday), Lois started getting fevers that needed either Advil or Tylenol to control, running as high as 102F. Sunday, Lois started feeling pain in the same area that the largest cluster of liver tumors are. This didn’t build up slowly, it just showed up while she was taking a deep breath.
Monday, another opening, and we went back in for the liver biopsy. Normally these are done while they’re doing the mapping, but since these were unscheduled opportunities, they had to be done separately.
So, another port access, another set of pokes, and more discomfort. And continued fever and abdominal pain.
Wednesday, we came back in again, this time for scheduled chemo – and another port access. Hooked up to the portable pump for the 48 hour infusion. About this time the tummy pain went away, so that was some physical and mental relief.
Friday, back to VM to deaccess the port, and get a shot of Neulasta, the immunity booster that makes you feel *horrible* for 3 days. Reminder: the bone ache you feel when you’re coming down with the flu – same thing. Your bone marrow is working overtime to produce white blood cells, and it just hurts.
Saturday, no more steroids (given with the chemo), Neulasta kicking in, the damned fever, nausea, return of the abdominal pain, lethargy and just feeling like crap with a capital ‘C’. No appetite, almost impossible to take Advil or Tylenol because of the nausea and Lois’ gag reflex on pills. No food intake which makes her even weaker, and nothing that has any appeal. And the chemo affects the taste buds so comfort foods absolutely don’t work.
Sunday, very slightly better. But still the effn fever and yuckiness, and horrible food confusion: When she gets hungry, she doesn’t know what she wants to eat and nothing tastes right.
Monday (this morning), waking up at 6:30 a.m., 102F again, but it took over two hours for the nausea to calm down long enough to take Advil, so another 2 hours of being so terribly uncomfortable, cold, and unable to really even move much because everything hurt.
Many of you have offered to help us with meals, which is tremendously appreciated. But the reality is we don’t know what will work, how anything will taste, even after factoring in dietary restraints I’ve talked about in prior posts.
All in all, it’s just been a real booger the last 2 weeks and Saturday was the worst day we’ve seen in a very long time.
It’s agonizing to see my darling, my love, my Angel in so much discomfort. It’s just so SO wrong.
Hoping this will start to improve soon as we get past the Neulasta and chemo-surge.
One good-news item: On Friday, we got another call from IR, who now have us scheduled for May 5th for the first radiation treatment. But, they cautioned – they don’t know how much will be covered by insurance, so things are not “finalized” yet. No matter what, we HAVE to have this done. What’s the value of money versus life-saving procedures?
As always, thank you for your kind words, wonderful support and love. It helps far more than I know how to express.
We’re in the middle of a procedural whirlwind. To recap – a week ago we met with our newly added team, Interventional Radiology, to start the process of getting radiation therapy to hit the tumors in the liver ASAP. Love the new addition to our set of trusted doctors.
They also explained that their schedule is extremely full, to which we responded – we’re flexible and available and anxious to get after this.
Last Thursday, an opening gave us the opportunity to get in for the mapping procedure. Here, they enter the femoral artery at the groin (a puncture), travel up the artery and eventually reach the liver. From there, they release mildly radioactive material that helps them “paint” Lois’ network of blood vessels. Complicating this was that she had some unusual anatomical structure. The analogy was that of a expecting a typical cat with 5 toes, and finding 6 toes instead. But – the mapping went well and produced excellent information.
On Friday, they called us to let us know that another cancellation gave us the chance to go in for the much-needed biopsy of the tumors in the liver. We had that done today (Monday), so that the teams can better identify the mutation(s) the cancer has evolved into, and perhaps help determine more accurate chemo and other drugs to combat this.
Both procedures went well, and Lois is resting after another long long day. Originally, both the mapping and biopsy were to happen at the same time, so back-to-back (almost) full days of separate procedures have worn us both out. But – Wait!!! There’s more.
Wednesday, we go back for new rounds of chemo, kitchen-sink-approach and HOPE/PRAY that these work!!! Please see my previous blog on the serious worries there.
We still don’t know when they’ll schedule the actual radiation treatments. These need to get approved by insurance, but at least we now have the preliminary steps taken care of.
Friday, we go back in to wrap up this chemo session, de-access her port and the immunity booster shot (that really makes her feel rotten for 3 or 4 days).
NOW – a new concern has surfaced. On Sunday afternoon, I heard Lois YELP with pain. Upon asking, she told me that something deep had suddenly hurt when she took a deep breath. This has continued to get more sensitive, and it’s exactly in the spot where the larger cluster of tumors in the liver are. Lois has also been running a low-grade but irritating fever in the last 4 days or so. While we think this is due to some folks sharing their crud with us, there’s really no way of knowing at this time.
Talking with our radiology team today, they don’t believe this is related to the mapping. Rather, the area that’s hurting (‘3’ on a 1 to 10 pain scale) is probably coincidental, and being caused by the tumors as they are starting to put pressure on the “capsule”, the outer envelope of her liver. Since we can’t have surgery, we have to hope that when we get the first of two radiology treatments, along with the chemo that’s about to start, that this will help contain this.
This is the first time that the cancer itself has caused any significant pain, since the initial diagnosis. It’s since become an almost constant thing, which is tough to witness. Seeing my baby in any kind of pain is just very very hard.
I will let you know what we find out when this question is discussed with our oncologist on Wednesday (when we go in for chemo). And let’s hope that the fever has gone away, that her immune system numbers are strong/normal enough to let chemo take place!
I have a number of other related topics I need to document. Not just for ourselves, but also for anyone else that’s on a similar journey. I try to space my posts out so you’re not overwhelmed.
Question for you – we also have recent discoveries and experiences in nutrition and meditation. Would you prefer for me to spread these out, or share this info now in another set of back-to-back posts? We’ve gained some tremendous insight, especially in the meditation space (with some very spooky things that are happening).
As always, thank you for support and prayers!!!! My Sweetheart tells me that they really help!!!!!
Lois and I met with our radiologist (really really liked him!) today to find out how this chapter is going to probably play, and got a reality check that was needed.
After reviewing all the images from the PET and CT scans with us, the game plan is the same as what I’ve already described: Using radioactive beads to get after the tumors in the liver. This won’t be a cure, but can help us buy more time.
The most important thing we learned today: when someone gets colon cancer, the most likely thing to happen is that it spreads to the liver, gets an extremely rich blood supply and then really grows. In fact, it’s colon cancer in the liver that is the largest reason this f**ker will take people out. The other spots we have throughout her gut aren’t good, but they aren’t the major concern at this point.
So, we now know where the battleground is, and that helps us in terms of the meditative “muscular” strength we’re actively developing.
I also asked about the possibility of a liver transplant a month or two ago. The unfortunate answer is “NO”. Transplants for cancer patients just doesn’t happen. There are lots of reasons, but this appears to be a solid brick wall.
We also will be scheduled for a biopsy so we can identify exactly which molecular mutation we’re dealing with.
On the treatment: the radioactive beads are different than what are used in prostate or other cancers. Instead there are millions of these, all about the size of a red blood cell that get delivered to the liver. The intent is for the cancer to suck these up and for cancer cells to die.
Like anything, there are risks: too much of a dosage and the liver gets killed. There a chance that some of the beads can end up in the lungs. There’s always the risk of infection, an abscess, or a liver ulcer developing. These things can happen anytime up to 2 months after a treatment, so once again, constant vigilance is needed (symptoms include jaundice, high fever, severe gut ache, etc.).
The big plan is to first have a mapping procedure, where they explore the artery and the main vein that feeds into the liver and identify the pathways they want to use. A few weeks later, treatment #1 for the right lobe. A few weeks after that, the left lobe. I’m still not clear on when chemo will show up on the calendar, only that it’s not allowed to overlap. We’re currently scheduled for April 17, but that may get changed.
The radioactive beads are Y-90 (Yttrium-90), and have a half-life of 63 hours, so they’re “hot” for a couple of days. If you don’t know, a half-life is the amount of time it takes for a material to go from the current level radioactivity to ½ of that same strength. Each bead has a radius of about 1/10th of an inch, emitting beta particles (electrons). The hope is that we can really “poison the water”, i.e. make the blood supply feeding the liver cancer cells toxic to them.
An immediate set of hurdles: insurance and scheduling. For the insurance, we have to hope that our coverage will get approved. The Y-90 is FDA approved, so we’re optimistic that this can get the OK and that very quickly. The 2nd hurdle is scheduling, as the “system” is pretty plugged up with other cancer patients also getting treatment.
So, a new set of concerns I need to maintain clarity in my head, and help keep the waters calm for my sweetheart.
First and foremost – I’m still <slowly> working through all my personal THANK YOU notes to everyone who contributed recently. You all made a HUGE difference for us (AGAIN)!!!
We’re about to jump back into the treatment universe, having enjoyed the last few weeks of being somewhat normal (and even able to work a bit)!!
Tomorrow morning we meet with a new group: our radioactive treatment team. This meeting will set the stage for the glow-in-the-dark particles they’ll be using to attack the liver tumors. This gets trickier, as we can’t have both radioactive treatments and chemo going on at the same time – that’ll kill the liver. So chemo infusions will be “woven” around the RA treatments, with very very careful monitoring on how the liver’s doing.
I don’t yet know the timing, just tomorrow’s consultation, and then the first chemo, slated for the 17th. Somewhere in there, we know there’ll be a biopsy as well. We’ll also be holding off on the Avastin (the drug that cuts off blood supply to cancer), as the radioactive bead is placed by traveling up an artery into the liver. Don’t want to choke off the highway…
Also to elaborate on why chemo has stopped working: There are three drugs for colon cancer. Call them “baseline”, ‘A’, and ‘B’ for simplicity’s sake. 2 years ago when we were diagnosed, the treatments were a combo of all three, and they worked. Since last June, they’ve given us baseline + A, and when that was proven to be ineffective, they switched to baseline + B which also hasn’t worked.
It’s hoped that by going back to all three, there may be some synergistic effects that the other combo’s couldn’t achieve. And – when we do kick in the Avastin, that has to be delivered with chemo, it’s not a stand-alone drug.
The reason chemo has stopped working – colon cancer is known as a “hard” tumor. As it evolves, it builds protein walls or castles that prevent the chemo from reaching the actual cancer. If we could penetrate the walls, life would be far far FAR better.
I believe (but still need to confirm) that this is why T-Cell/Immunotherapy treatments don’t yet exist for us: being able to get through those outer shells. Other cancers (e.g. leukemia) are “soft”, hence the immunotherapy routes that are available to those patients.
I also need to talk about where we’re going in the meditation space, but that’s a separate topic that will have to wait for the next opportunity for me to discuss.
Likewise, our dietary challenges have still not stabilized and we’re still searching for balance points. That too will need to be a separate post to be shared, but the short version – we haven’t been able to gain weight, and it’s far too easy to lose it. The other day Lois lost 1.5 pounds in a 24 hour period!!!! And that too warrants some more lengthy discussion, as it will also be very relevant for anyone else in a similar battle. Lots and lots of active learning taking place here.
I will let you all know scheduling and plans when we find out more.
Our love to you all!
My heart goes out to you Lois and Jerry; this is a hard battle, but you two have the kind of teamwork to really do everything you can to get through this and to continue to enjoy the fun lifestyle you have known together for so many years. My love and prayers are with you; this is such a difficult time for you both. Having been through this with Dick, the memories of it all are very close to my heart. You have many folks supporting you and that has got to be very heartwarming for you, as well as many people praying for you. Wishing you only life's very best. Love, Kay
As always, I’m sending you both good energy and visualizing the best for you. I’m fascinated to hear what it is about the meditation process that has you commenting about it
We are sending you Both All of our Love ~ You are in our thoughts Always ~ We are with you both Always in Loving Healing thoughts ~ Sending Huge Hugs ~ Love from Roger ~ Sonja and Family ~
Praying hard for you both! Lois, you are such a strong willed, loving person. I know you’re going to beat this! Jerry, we all know how lucky Lois is to have you by her side. Sending love ❤️
Well, I'm going to focus on the good news, and keep sending thoughts re: the Review Board of having an "ah ha!" moment.
I honestly can't thank YOU enough for keeping us so informed Jerry. It makes knowing what to pray about, ask for, and identify the specific kind of pure energy thoughts that should be sent your way. I love you guys so much and I love this picture of Lois. You two are such incredible gifts and I am praying that your greatest gift in return is on the way! Complete and total healing and restoration. Much love!
Love your story. Would love it even more if you could post some photos from those early days 42 years ago. Sending my love and good wishes.
Hi Lois and Jerry - love to you both. I found that taking Claritin prior to the Neulasta shot [immune booster], cut down on my aching bones... if you can stomach it or your oncologist allows. Best.
Thank you for the update Jerry. I keep you both on my heart and in my prayers always! I want to be of use in some way. Is there anything I can do to help??? Run errands, clean at your house, anything? Anything?! I will try to come up with ways to help you too but please, please know that I am a phone call away if you come up with any need. Love you both so much!
Hey you guys. Just think of the fun we are going to have after we beat this together. Our journeys have crossed paths again and the very minute I beat my stuff I am down to you guys for our happy dance!!i admire you two so much, and Lois is the toughest person I know in a streamline package
thinking of you both nd sending hugs. XXXX
Sending our prayers and continued love.
Hello Jerry & Lois, Thank you for the update. We are sending love and prayers your way always. As for your PTSD statement Jerry, I am no doctor, but many people who are not vets deal with it. I know I have my own, so you may have it on some level. I would think after all you both deal with on a daily basis, the unknown has to effect you. It is after all a stress disorder. Sending you both much love and hugs and just wanted to say hello! Thinking of you! Lana & Patric
I am chanting for the two of you. And sending intense love and light ...love Kelbi
Thank you for continuing to share your journey. It takes great courage, and love, to continue on a path of so much pain, uncertainty and yet joy. The two of you are like a finely honed violin. Such beautiful sounds. My thoughts and wishes for healing go with you both.
Jerry and Lois, this obviously isn't what either of you wanted to hear and certainly not what we wanted to hear either. We remain in your 'corner' and are here for whatever you need...and we'll be happy to throw in some 'green' support as well. Our prayers are with you, we will add those of our prayer group tomorrow...
Way to go Lois! You are amazing! You both are amazing! What a team. So happy for you. Cheers! Hugs! Love!
My favorite lovebirds!! Every single fiber in my being is sending love, light and healing to Lois. xoxoxo Aaron and Caspian too. xoxox