We Are Home

I was glad to be included in a meeting we had with Todd’s doctor at CHIPSA before he was discharged. He went over Todd’s ultrasound (as I mentioned, it was given in Spanish) he stated his concern for the tumors because they actually grew during the time we were there. He also went over the radiologist statement that he believed that cancer presents more necrotic or squamous type. If this were true, this would mean these tumors would be secondary instead of metastatic. The only way to know for sure is through pathology. The doctor and Todd agree that the next step is to have the surgery to remove these tumors. The radiologist did not mention in the report at all about the right side that he explained to Todd during the exam! So there is absolutely nothing noted anywhere on what he thought of the right side. I don’t even know what to think of that, like is it something we need to worry about? Is there really something going on that side? He seemed pretty sure about having it removed too, but now it is not stated anywhere, how frustrating is that? The doctor said that we should mention it to the surgeon. He reviewed his lab work during the stay and it was good with a few minor changes, his protein was a little low and they gave him the ok to add some free-range organic meat to his diet. Surprisingly, his sodium was a little low too, Todd loves salt but while we were there they provided this vegetal salt that we became addicted to, they call it the “salt-lovers salt”. Also, his Eosinophils continued to go down (details later in this post)! We received the take-home meds and said our goodbyes to the staff and another couple we befriended during our stay.

We were so thankful when we made it through the border back to the United States! The process was a little slower than it was coming into Mexico, but it went smooth and without being selected to go through secondary. Now approaching the boarder was crazy, there were tons of vendors trying to get you to buy their stuff and food, asking us to roll down the window, it was a little scary. Once you cross the port of entry we felt very relieved knowing we were back on U.S. soil. That night in San Diego we ate at a great vegan restaurant, Donna Jean if you are ever in the area this place and the Choice Juicery are a must! We were looking forward to a better night’s sleep, but Todd was up several times with a burning sensation in his armpit. When we arrived at CHIPSA they said that this sort of feeling was normal during the IV’s but Todd had not felt this kind of pain before, and still not sure what that was all about.

Saturday we had the whole day to spend in San Diego since our flight did not leave until 10:00 pm. While we were eating breakfast we received the news that Todd’s grandmother had passed away, she had a stroke in January 2018, shortly after we got Todd’s cancer diagnosis. Before we left Hospice had been called in and Todd went to see her, thinking she would pass while we were gone. Nothing can fully prepare you for the news of losing someone, or the sadness despite knowing that she is no longer suffering. We were almost home and he was hoping to get to see her one more time. The last few weeks had been rough enough and I felt so bad knowing that his feelings were being hurt even more. That day I think walking around Little Italy was a good way for us to work through some of those mental emotions.

It’s been non-stop since we got home on Sunday (Todd’s Birthday) after flying all night without any sleep. Well, I did not sleep a wink but Todd and Kloey took some short naps and Kloey slept all the way home. We were beyond exhausted and just wanted to crash when we got here. Unfortunately, because we had the hurricane Dorian threat the week before our house was shuttered up and packed with our outside belongings, so we had no choice but to deal with that and once I start going with something I have a hard time stopping. I had been up for at least 36 hours and finally got to the point where I needed to pass out and we all did.

Monday, we continued work around the house and Tuesday, Todd and I drove to Orlando Health for another surgical consultation. The surgeon was adamant that he was not willing to do the “cherry picking” type of removal to the affected tumors and a few others. He would only do the lymph node dissection on Todd’s left axilla. He did not seem worried about the right side because it did not show on the PET scan, this is something we have heard in the past and thats all great that he’s not concerned, but that doesnt change how we feel or change what the radiologist said! However, he is confident that he can remove all of the lymph nodes with minimal damage to the nerves and muscle, and would need to remove some of the skin due to the adhersion to the biggest tumor. The greatest risk remains lymphadema and one of the main reasons Todd did not want the surgery to begin with. They are offering to do a lymphnode transfer at the same time he is having the dissection done. This procedure is done by a plastic surgeon after all of the lyphnodes are removed by the oncologist. They go into another source and transplant a couple nodes from one area to another. This is suppose to reduce the risk of lyphadema, but we have some questions and not sure if this is the right decision to make.

He wanted us to talk with the melanoma specialist again for some treatment options in regards to shrinking the tumors prior to surgery. Although we were pretty positive that that was not anything Todd wanted to do, somethings did sound interesting. So we grabbed some quick lunch, luckily there was an Earth Fare right down the street and made it back to the office. One of the first questions that were asked is if Todd had been tested for BRAF? Um no, he has not and when I asked about it in the very beginning of this journey they told me that they did not need to test because it was not lymphoma…and now creeping up on two years later they are asking if it’s been done and wants to know the results! The specialist said that there is a pack of pills that can be taken if the BRAF is positive to shrink the tumors. We are all hoping that they can pull that testing from the pathology that was done from the first lymph node that was removed, otherwise they would need to take a biopsy and to us, they can just wait until the removal to test those. If the BRAF comes back negative his approach is the standard of care for more immunotherapy and radiation. He seems to think that radiation does help when the doctor at Mayo thought otherwise (even though it was still in their treatment plan too). The other option is for a clinical study that sounded pretty good involving taking a tumor out but making sure to leave one in and send it the lab to increase the surrounding T-cells then injecting those good cells back in. This sounded very similar to the procedure that was offered to Todd in Mexico for his last week but we were unable to afford it. However, once the clinical specialist came in to further explain the procedure it involves a 2-3 week inpatient stay where after they remove the tumor, then deplete the lymph system with chemo drugs…nope that doesn’t sound like anything we want to do either.

At this point, Todd wants those tumors out as soon as he can and that is the one thing everyone has in common. We do have an appointment set up with the plastic surgeon for next Tuesday to discus the lymph node transfer procedure. Then hopefully we can get this surgery scheduled asap and resume the treatments we have from Mexico along with some natural approaches and finally be on the road to recovery. We are so over this situation and can’t wait to get to our new normal lives.

Here’s a little icing on the cake that we can’t eat…back to those Eosinophils that have been high for so long and were way down being in Mexico. A few days before we left we found some mold on the outside of our air conditioning box. Neither of us had the time to deal with it and knew it was something that would need to be done when we returned. Once we saw those levels go down we knew that has been the issue, we are sure along with the carpet in our bedroom. We have been camped out in the living room since we got back and today Todd ripped out the carpet and we have a new AC unit inside and out being installed over the weekend. Just another expense that we cannot afford, but has to be done, it is not good for any of us.

Life throws all kinds of curveballs and we are taking them the best we can, one day, one moment at a time. I know this post was long, so thank you for reading it to the end 😉 Please keep sharing our story, we are going to continue to need funds! We are grateful to you all.

https://www.gofundme.com/f/todds-stage-4-cancer-journey&rcid=r01-156833827369-0e8217fc401d4d6c&pc=ot_co_campmgmt_w