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.
First – THANK YOU AGAIN for the wonderful deluge of prayers, positive comments, and contributions. We just couldn’t get by without you. You certainly are helping me keep up MY attitude and financial worries at bay.
Friday saw our first of 2 treatments, the focus on the large cluster of large tumors on Lois’ left side of the liver. It was a pretty delicate procedure as the surgeon needed to feed the catheter through a blood vessel that is shaped like a sine wave (not typical). The extra twists were very tight curves that he had to navigate completely past, in order to also bypass veins that go directly to the stomach, and then reach the channels that feed the tumors.
I had a long discussion with the doctor while looking at all the photos, and wow!!! He had some serious and careful driving to do (while avoiding the terrifying risks of puncturing the main artery, as well as not letting the Y-90 get to the stomach or lower GI and creating serious ulcers).
Tech info: Y-90 is short for Yttrium 90, a radioactive isotope that only the liver can tolerate. It emits beta radiation (electrons) with a penetration range of about a 1/10th of an inch, and a half-life of 63 hours. This means that 63 hours from now, the strength of the radiation will be ½ of the current measurement. And 63 hours from that, it will be ½ again…
The good news – the tumors he targeted this time are all clumped together. In the photos, they look like a group of 7 cotton balls. But, by being a fairly compact group, it was easier for him to administer a much stronger dose; i.e. the Y-90 was a much bigger poison pill for the tumors to ingest. This will also kill all the healthy tissue that the tumors are woven around, but her liver will be able to take this trade-off.
Near this cluster is also an isolated tumor that’s much smaller, and something he couldn’t reach with Friday’s procedure. In fact, since we don’t know if the current chemo is actually working, the plan is to watch this and see if it shrinks. If it does – that would be the best news possible!
We still have a 2nd radiation treatment needed, and this one’s more problematic. For this, the tumors are smaller, but are also much more wide-spread. This means that the doctor can’t deliver near as strong a punch, since we need to balance that against not harming the surrounding healthy tissue.
One “big” question I raised: how will we know how effective the radiation is? The answer is unfortunately pretty vague: Mainly by watching the cancer markers in her blood labs. After being killed off, the tumors don’t disappear or get re-absorbed very quickly. In fact, they may remain, and just take up space, but change to a different shade of grey as far as the CATSCAN is concerned.
So… hoping and praying that
(a) the Y-90 is effective at killing cancer
(b) the current chemo is also effective at killing cancer
(c) the next Y-90 can also work with minimal damage to healthy tissue
(d) focused meditation is also working (still need to blog about this)
Next up will be either radiation #2, or chemo, still waiting to find that out (these have to be at least 2 weeks apart from each other).
In the meantime, the fever, nausea, and deep liver pain have returned, along with a huge amount of exhaustion and lethargy, loss of appetite and energy. The medical cannabis helps, but we have to be careful with that of course. And of course the actual puncture wound to the groin hurts, along with her degenerating hip, and headaches caused by the port under the collar-bone. The latter restricts head movements, and causes a lot of muscles to complain.
The lack of appetite is again a major challenge, and I am watching her weight drop. The one thing that’s helped is simply getting out to various local restaurants for a better variety of food, as she’s so burned out on almost everything. But if Lois says she’s in the mood for such and such, then that’s what I’m going to make sure she has.
We met with our oncology team yesterday to get labs done as a follow-up to last week’s extremely challenging difficulties with fever, nausea, pain, lethargy and overall goo. At that time, Lois’ inflammation numbers were sky-high, due to the pressure the liver tumors are putting on her stomach.
Once we found the right product combos of medical marijuana (thank you Washington State!!!), things got under control very quickly and brought some relief to my sweetheart.
MJ isn’t cheap, especially with the particular products we need. About $70 for a 2-week supply – and that’s with the 20% medical discount that we qualify for. I will say this – we finally found someone behind the counter at the state-certified dispensary who know what products to recommend. This was based not only on her own needs (she has chronic IBD), but also from the large number of other cancer patients that go there. If you want more info, please PM me and I’m happy to share.
Inflammation numbers were substantially reduced, liver numbers overall were much better, AND… AND – one of the cancer markers dropped a bit!!!!
First time in almost a year that this didn’t go up!!!! We’re hoping that it’s also due to the chemo from 2 weeks ago, in conjunction with the medical MJ she’s taking.
Our doctor cautioned us – this is only a single data point, so we don’t have a trend (which we both knew). But we’ll take every positive bit of news we can get!
Tomorrow (Friday) is our first Y-90 radiation treatment. They have to get a lot of different things right. Too much, and they kill the liver and we’re done. If the “beads” get outside of the liver (to the lungs, colon), and we’re facing some horrible ulcerations. The liver can tolerate this type of radiation, the other organs – not at all. The beads are delivered through specific veins and arteries, so they really have to do this carefully. It’ll be a long day at the hospital tomorrow.
We also have to hope and pray that no infection(s) occur – that too is always a significant risk.
There’s the likelihood that the fever/nausea/pain will also come back as this is an invasive procedure; organs just don’t like getting touched. But at least this time we’re ready to manage the side effects, and we won’t be dealing with the additional burden of chemo and Neulasta (immunity booster) that made the last cycle so horrible and some of the worst days we’ve seen.
If all goes well, we’ll be getting another round of chemo in two weeks which we’re hoping will help get after the liver tumors (and elsewhere). We don’t yet know if the chemo is actually working, only hoping and praying for this!!!
After 2 weeks of lethargy, fevers, and abdominal pain, I decided we had waited long enough. Lois was just feeling worse each day, eating and drinking less, and absolutely no energy to her. She’s lost 4+ pounds in one week.
We spent the entire day yesterday at VM (a very long day that), got labs and met with our oncologist. After listening to our/my concerns and looking at the lab results, he ordered a CTSCAN. The labs showed inflammation numbers that were sky-high, but nothing that blatantly indicated an infection.
The CTSCAN was a mix of news. The good news: no obvious signs of infection or abscess. Whew! Since all this has started about a day after the mapping, the big worry was that something had developed from that.
The not-so-good news: the largest of the liver tumors has continued to grow, and is now about 6.4 cm. It’s large enough that it’s pushing the outer surface of the liver into the stomach.
This is the source of the discomfort as I suspected: the stomach is complaining by making her feel nauseous. The body is responding with the fever, and all the other yuckies.
Lois’ gag reflex on pills has max’d out as well, so that has amplified issues even more. (We’re very familiar with all the various tricks, applesauce, chocolate, etc. – and her palate sees through all that).
But – last night found a number of temporary answers. First, I finally connected with someone that’s very experienced and knowledgeable with medical marijuana, and from there got the right product to help (we are not MJ experts). Second, I got children’s liquid ibuprofen and the correct dosage needed for the fevers.
The MJ brought immediate relief – nausea GONE! Pain – greatly reduced. Lois looking much better and even smiling! This particular mix has been put together for reduction of inflammation, nausea – just what we were looking for. It also has a higher mix of THC (the psychoactive component), which anecdotally is indicated to help kill cancer cells. It also helps tremendously with folks suffering from IBD (Irritable Bowel Disease)
We don’t have to be as vigilant on the fever, only take it if she goes over 100.5F, so that also helps. And the liquid ibuprofen (grape) is reasonably tasty.
In the meantime, we also got absolute confirmation that the first radiation treatment for the liver tumors is booked for May 3rd, with the caveat of insurance uncertainty (just a question of how much they will cover). Don’t care about that, just gotta do what’s needed.
The radiation will reduce, but not cure, so there’s a lot of issues that we’ll have to deal with. But just knocking this down some will help in the meantime.
Somehow, I have to find a way to just bring some fun back into our routine. My baby could use some serious R&R for a few days. OK – so could I.
The only downside to the MJ: About 2:30 this morning, she woke up with a ferocious case of the munchies .
I will keep on searching for answers, and will keep on fighting – always.
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.
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
And still, Lois has the best smile on the planet and you have the ability to maintain this flow of information. I am in awe of you both. I am appreciative of your example of strength and dedication. I am praying for full recovery/full restoration.
I am chanting so hard for the two of you will keep trying to add to your fund... love Kelbi
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...