Trying to accept the things beyond our control

Today has stretched both Tristan and me to our limits. At some point, you forget how to even react to the next blow, of if you should. It sounds extreme, but the intensity of what we are dealing with is beyond belief at times. The only thing that keeps me pressing on without hesitation is that not only will getting past this save the life of the person who truly gives me life, but I think we will have a new lease on our existence together that will mean that the years to come could be the brightest ones yet. That is what I hold onto in the darkest times.

Let me back up a bit. Please forgive the following saga.

Tristan and I made our way to Palo Alto last week to visit Stanford Medical Center for the first time and to meet with his surgeon, Dr. Amy Gallo. When we arrived at the hospital, we had to drive around the packed parking garage about four times before we could find a spot , so we were rushed to get to the appointment and we ended up being a little late. When we got into the exam room, we met Tristan’s transplant coordinator who has been our lifeline to Stanford for the last few months. When she left, Tristan became really quiet, and I could tell that the magnitude of all of this was hitting him. He quietly said, “I just can’t believe I am here again. Doing this again.” I don’t really have words to express the power of that moment, and once again like so many times before, I felt in absolute awe of my husband.

Dr. Gallo came into the room (first impressions: young, smart, serious, focused, maybe a little intense). She asked how Tristan was doing and he simply said, “I am scared.” He said he was scared of what could come again from this transplant–that he was starting down a path that would repeat the past. I was sitting by his side, trying to hold it together and brush away the tears that kept trying to flow. She very honestly said that his history makes this process risky and that the return of the lymphoma is definitely on her mind, too. It was really terrifying yet freeing to get it all out in the open and say it: we are scared, this is a risk, but there is also no other option and this is the right thing to do.

Dr. Gallo talked with us for nearly two hours, and I’ve never seen Tristan open up to a doctor like he did with her. I take this as a very good sign. I think her direct style of communication and recognition of all that Tristan has been through were refreshing and positive. She also knew Tristan’s medical history better than even he did, citing specific dates, medications, procedures, and complications without even cracking open his chart. The mood in the room somehow lightened amidst such intense conversation, but I think we finally began to feel a sense of excitement and hope.

Dr. Gallo asked if Tristan would be willing to meet with one of Stanford’s oncologists before the surgery and he agreed. After Tristan finished chemotherapy in 2008 (the chemo that nearly killed him), he was 20, had spent a year removed from life, and was feeling completely lost, but he was alive. The following years would bring many things and an incredible amount of growth for him, but being a part of the medical world was not a part of that time. The last time Tristan saw an oncologist was in 2008 when he was declared cancer free. I want to stress that there are absolutely no indicators that Tristan has anything to worry about in regards to cancer now, but Dr. Gallo wants to have everything out on the table for Tristan to understand and process, and to prepare in case anything should happen again. This is scary as hell, but we both feel that it is the right thing to do. Tristan wants to go into this process with his eyes wide open this time around.

We were able to get Tristan an appointment with an oncologist and also to pencil in the transplant for November 18. Then, we learned that the wrong oncology department had received the request, and the appointment was cancelled. At that point, the right department, the Lymphoma Clinic, called Tristan and started asking him questions as if he were a current lymphoma patient being treated. This all kind of pushed Tristan to the edge, so I stepped in to figure out what was going on. Someone was on vacation and the wrong person was talking to us. After what felt like 50 phone calls, we ended up speaking to someone else in the Lymphoma Clinic who started the long process of collecting the rest of Tristan’s oncology records. By the time we heard back, we learned that the next available appointment with an oncologist is October 28, just a couple weeks before his penciled in surgery.

Everyone keeps assuring us that this is plenty of time before the appointment, but no one seems to understand all of the planning and money we need to shell out to make things happen for a specific time frame of relocation to Palo Alto. Nothing on Air BnB is refundable, and everything costs somewhere between $5k-$7k/month (thankfully we had the fundraiser and everyone was so incredibly generous, because we are going to use every cent!). The other issue is that the timing of the transplant backs up to thanksgiving and we need a reservation until, essentially, Christmas, so we are paying premium rates and competing with a super high demand for these rentals. Right now there are only a few places left for this timing, so I cringe to imagine what the pickings will be after October 28. I think we are going to have to take a risk and hold our breath that the November 18 date will remain in place after the Oct. appointment. It’s a big risk, but otherwise we risk not having a place to stay.

There’s only so much that I or any reasonable person can take. I had a straight up lay-down-the-law situation today on the phone with the lymphoma clinic, but they basically told me there is nothing they can do. Then that thing happened where I couldn’t stop crying after I got off the phone and Tristan had to come give me a hug at work to make it stop.

Sunset at Asilomar

At least we live in a place where we can see things like this nearly every night

Perhaps this stress and emotion is related to the fact that for the last four nights Tristan and I have been woken up by his dialysis machine setting off screeching alarms EVERY HOUR. Perhaps. He’s been going back and forth with tech support, but they won’t help him without his doctor being on the phone with him (ummm… has anyone ever been able to get their Dr. ON THE PHONE with them to talk to tech support?! Just curious, would love to hear if literally anyone has ever been able to make that happen). Then he took the machine’s program to the dialysis clinic yesterday to get fixed, and his nurse wasn’t sure how to use the software to change the program, so Tristan had to try and figure out this software with her and get it programmed correctly. No dice, still alarming. Then it turns out that the Dr. had a completely different program for the machine documented in his chart, so the dialysis company can’t fix the card even with the nurse on the phone. And the Dr. said he was too busy today to help Tristan. Then the dialysis company said they didn’t recognize the serial number on the machine that they themselves delivered to Tristan and accused him of not inserting the card that is literally required to run the machine. The same machine he has been using for a year and a half. WHAT?! AHHHHHHHHH. Sometimes it feels like we are living in an alternate reality where people don’t care and aren’t willing to help even though it’s supposed to be their jobs. But, that couldn’t be right, could it?! *sigh*

The level of defeat we felt today was immeasurable. When we got home, tears were shed, a couple of things were thrown, and wine was consumed (ok, that part was just me). Then something happened. After letting out our frustration, anger, fear and sadness, a weight was lifted. We picked up our house, lit candles, put on some music, and cooked dinner together. And just like that I know that we will make it to tomorrow after all. And maybe tomorrow will actually be a good day.

I guess the only choice we have when we fall down is to get back up and try to take some semblance of control over the small things we still have the ability to influence. Our life is intense, painful, and just too much sometimes. I thank God we have each other and our families, and that we keep inching closer to this all being a nightmare of the past. …..but I swear, if that machine beeps at me one more time…

Thanks for reading this particularly long and frustrated post. Hopefully the next time you hear from us it will be smooth sailing. I’m going to go ahead and not hold my breath on that one. 🙂

With a teensy-less-bit-of-gratitude-than-normal,

Alisyn

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Numb

Tristan learned today that he is ineligible for the Stanford immunosuppressant-free procedure for a transplant. I feel a lot of things, too many to put here, but the thing I feel most is disappointment. I put my faith out there that his team of doctors would make the best choice, so this must be the best choice, but without knowing everything that went into the decision, it feels short-sighted.

He is eligible for another standard transplant, which we should (and will) be very thankful for, but mostly I just feel numb. How can he go through this again? Will it be different this time? The what ifs are plaguing me.

It’s hard to admit that I have no idea what I know and what I don’t.

I am going to leave it at that for now, and I am sure there will be more later when I can process past my initial reaction. For now, I think about tomorrow, which is a new day.

Eckhart Tolle Acceptance

Stanford Visit 1

Hi friends,

Well, the first appointment at the Stanford Transplant Center is complete. I am still processing the information that we received, because it was a LOT (as shown by the length of this post), but there were no significant surprises and their whole operation seems very efficiently run. The day started with a short presentation (PowerPoint and all) from one of the Nurse Practitioners. We completed paperwork, went through brochures, and familiarized ourselves with the standard process for transplantation. This was really not anything new for Tristan, who has been through this all before, but it was incredibly helpful for me to really understand the typical process.

One moment that struck me and brought a few tears was when the NP was going through the long list of side effects that are possible with immunosuppressants. For those of you who don’t know, all kidney transplant recipients must take drugs after the surgery for the rest of their lives to prevent rejection of the transplanted organ. These drugs have a wide array of possible side effects (you can imagine what would happen if your own immune system was being chemically lowered… you would be susceptible to a LOT of things), the worst of them cancer. The NP was trying to minimize the fear that many recipients have about side effects by comparing the list to what you see in the warning packet that comes with a box of tylenol. Rightfully so, since most lucky people will not experience the myriad of challenges that come from a permanently lowered immune system. Tristan, however, was one of the few who did develop cancer. This realization in the moment, combined with his under the breath sarcastic chuckle, made me very upset for a few fleeting moments until I forced myself to mentally move on.

The educational presentation was followed by an exam by a kidney specialist (nephrologist). He seemed very smart and really knew his stuff. He had a way of explaining things that was comprehensive yet clear. Tristan asked about the immunosuppressant-free procedure that Stanford piloted 8 years ago (read here for more info on that), which has seemed like the only procedure that he would be willing to try given his complicated history and elevated risk factors. What we learned, for better or for worse, is that the drug-free process actually has an elevated risk for cancer because recipients have to receive immunosuppression in addition to radiation for up to 12 months post surgery. However, the idea is that, after that grueling year, you are hopefully freed from a lifetime with a suppressed immune system and drugs. We learned that this procedure is usually only open to those who are having their first transplant and have a sibling who is deemed a match. Also, usually having had cancer would immediately make someone ineligible for the special process. That said, since Tristan was actually living immunosuppressant free for 7 years before dialysis, had cancer due to immunosuppression, and is otherwise healthy, they are going to consider him for this option. I have faith and trust that the team of specialists who will join together in a room with Tristan’s smiling face up on a screen to decide his future (is he eligible for another transplant? If so, which procedure? Does he need to do anything before he can move forward?) will make the best recommendation possible. That is a huge leap of faith, but I am just going to go ahead and put it out to the universe that it is a leap I am taking.

All of this information aside, we still have no idea what to do.

Option 1, get another transplant: The doctor drew a chart showing life expectancy compared to length of time on dialysis or with a kidney transplant. After 2.5 years on dialysis, they see life expectancy start to drop–1 year on dialysis takes 2 years off of your life, essentially. People with transplants tend to live much longer than dialysis patients, and their quality of life is very high. Even with this relatively new procedure, no one has died related to the kidney transplant, so the outcome seems positive. And, of course, you are freed from dialysis, which can be quite grueling and limits your mobility.

Option 2, stay on dialysis and continue to try and improve current kidney function: With a transplant comes more immediate risks and complications. Any surgery is risky, especially a second kidney transplant–especially if you are moving forward with a relatively new procedure. The emotional and mental trauma of being in a hospital, the financial burden and potential stress about finances, and the physical toll on your body–these are all coupled with the risk of cancer again, the risk of the kidney not working from day 1, and the risk of your quality of life being worse than it was before. And Tristan’s quality of life is pretty high right now.

Option 3, don’t make a decision now. Ding ding ding! This is the one we are going with for now. Stanford is considering Tristan’s case (he owes them about a pint of blood for them to run all kinds of tests and more medical history and records), and we will have a decision about his eligibility in the next few weeks I would guess. Tristan continues to work with his naturopathic doctor, Monterey nephrologists, and dialysis team to improve his situation.

We are not being short-sighted, trust me. This is just a huge, massive, and stressful decision that takes time and grace to pull through–and I feel like I am lacking both of these things right now. Tristan and I both believe that the answer and way forward will make itself clear when it needs to, and maybe this will happen really soon, or maybe it will happen down the road. All I know is that we need to appreciate where we are at, not take on any huge commitments or changes over the coming year, and continue to progress in a way that feels best for us.

James MichenerOn a side note, I had the privilege of meeting someone this weekend who was a caregiver to her husband for 20+ years before he left this earth just recently. I must say, I am in awe of her strength and steadiness as she works through the grieving process for something that she has been expecting, but is completely incomprehensible at the same time.

Meanwhile, I am trying to not let the stress of this looming future take its toll. Day by day, moment by moment, onward we go. 🙂

For those of you who muddled through this entire post, kudos to you! You must really love us or something. So, as a little prize, here is a BONUS wedding video 🙂 xoxo -Alisyn