Information Day

Wow, we got a lot of information today, including the great news that we now have six fertilized eggs on file with the University of Michigan! It is a relief to know that all the injections and driving time really paid off. I had an echocardiogram this morning which was really entertaining. My mom and I got to see what my heart looks like through ultrasound from various angles, and got to listen to the sound of each valve swishing around in there. Then we met up with Mark at the cancer center and set a date for chemo to start. My first infusion will take place on Monday, and we'll find out how long it takes based on how well my body tolerates the meds. It is possible that I'll need to stay overnight. It feels good to be moving forward- that much closer to being cancer-free!

Needle in the "Haystack"

Just woke up from a nap with Javi and Mark. We drove to Ann Arbor through a "wintry mix" this morning for the egg retrieval procedure. I once again opted out of the Versed that was offered, which might have actually made the nurses more nervous that I was. One nurse said, "why would you do that?" and another said that she'd never worked with someone who opted out of it. I feel pretty clear at this point that pain medications like Fentanyl in combination with breathing exercises are more than adequate for me when undergoing painful medical procedures. The benefits of opting out include being more alert and functional after the procedures, being able to remember how the procedure worked, and I have to admit a sense of pride that I'm able to get through the experience without relying on additional medication with potential side effects. I totally get how another person would see there being more benefits than downsides to taking Versed for a procedure like this, and the nurse actually amended my consent form to say that I understood the risks of opting out- stated as risks of "discomfort" and "memory." Considering that Versed comes from the family of date-rape drugs, I feel that not having a memory of the procedure could be a bigger risk to my overall well being.

So here's my memory of the morning's procedure. We arrived around 7:30am and didn't have to wait long until I was called back into the procedure room. I was under the impression that Mark was going to be able to sit with me during the procedure, and we found out that this wasn't the case at that point. I was a bit angry about the change in our plans, but I let it go pretty quickly so that I'd be in a calm state (also helpful for convincing the nurse that I didn't require Versed). I changed into a gown and thin blue booties, visited the restroom, and walked through a door to the room where the procedure was going to take place. The sedation nurse got me set up with heart and blood pressure monitors, warm blankets, and answers to many of my questions. She then placed the IV with little effort- I was concerned that this might take a while since I'm not too easy to get an IV in when I've been fasting. Things moved along pretty fast from there. She administered some anti-nausea drugs while we waited for the doctors to be ready. Several of the staff had experienced power-outages at home that morning due to the snow/rainstorm and downed trees so that was a  main topic of conversation. Once the two doctors and the med student were ready to go, the first dose of Fentanyl was administered through the IV and it kicked in pretty quickly. They used the ultra sound to get a look at the state of my ovaries, and then added the needle attachment to the probe which would be used to retrieve the eggs and the fluid in each follicle. There was certainly some pain and discomfort with each poke of the needle through the tissue and into each follicle, but I just kept breathing and reminding myself that it would be over soon and that this was an important means to an important ends. At one point, a follicle was pierced by the needle and I reflexively gasped in response to the sharp pain. I asked for more Fentanyl at that point. So they aspirated all but one of the follicles with relative ease, having to push on my uterus from my belly to move it out of the way of the needle while working on the right ovary and having to thread the needle through some of the cervical tissue at that point as well. This was remarkably less comfortable than the left ovary aspirations. The final follicle was a bit stubborn- as they pushed the needle towards it, it moved away rather than being pierced with the needle. It turned out that there was a clot in the needle that needed to be cleared before they could aspirate the last follicle so it got to be pretty painful at that point. All of the aspirated eggs and fluid were suctioned through the needle into little vials which were sent to the lab next door as they were filled. All in all, I was given 250 mcg of Fentanyl.

The lab rapidly determined that nine eggs had been retrieved and then they sent for Mark to retrieve his contribution to the effort. He required no pain medications, but perhaps it was still an uncomfortable procedure for him in its own way. Once he was done, they put him in a protective suit and cap and he got to come in to see me in the procedure room. They were nice enough to let me be the one to tell him about the nine eggs and we sat there together for a few minutes while I drank water and gradually sat up. Those of the nine eggs that were deemed "mature" are being fertilized by the ICSI method this afternoon and we should hear sometime tomorrow about how many were successfully fertilized.

In the meantime, I will be getting an Echocardiogram tomorrow morning to make sure that my heart is in good shape to handle the upcoming chemotherapy infusions. Then I have a consultation with the oncologist where I hope to get details and a schedule for the chemo plan. So tomorrow is a big day for information and next steps. I expect that chemo will start within a week, so the reality of that is settling in a bit. I'm feeling strongly that I'm ready to get started and that I also want to spend some time researching supplementary treatments such as herbs, nutrition, and immunotherapy in general. I understand at this point that the chemo is necessary to kill the cancer cells, but I would like to have a solid plan to heal my body during this process which is not part of the current chemo plan. I continue to not have any cancer symptoms and my port incisions seem to have healed nicely.

We met with a financial counselor yesterday and at least have a general plan to deal with the costs of this condition, which is absolutely no fun to think about. I'm trying to trust that I won't be completely financially ruined by this, but also trying to detach from the emotions that come up around money and finances. I'm being told pretty clearly by service providers and caregivers that my first priority has to be getting healthy, and I'm grateful that I have people in my life who are there to support me. Next week is spring break at WMU, so it is well-timed with (hopefully) my first round of R-CHOP. I will still work part-time and I can use some of my normal class time to get caught up on assignments from the last two weeks. Really looking forward to not having to drive to Ann Arbor every other day. There may just be one drive left for a follow-up on Monday. I plan to update the blog again by this weekend with the info that I get tomorrow. Thanks for following along, and may you be well.

One Last Shot

Tonight at precisely 8pm EST, I injected myself with the final shot of the IVF process, human chorionic gonadotrophin. This will stimulate the eggs we've been encouraging to finish the maturation process so that they can be "retrieved" on Wednesday morning. As of this morning, there are 4 front runners (follicles that are at least 1.8cm) and 5 others that are potentially mature enough (greater than 1.5cm) to get fertilized. It's very exciting to have this all happening and only slightly gross to think of how the doctor is going to get them out. I'll spare you the details, and leave you with the idea that this may be the most unpleasant procedure I'll go through, including chemotherapy. I am looking forward to knowing how many eggs we got and how many of them get fertilized (on Thursday). They will then be frozen until we are able to use them.

The next phases will including starting chemo treatments and solidifying a plan to heal my healthy immune cells that will be caught in the crossfire. I am grateful that all of my professors at WMU are being supportive and flexible with me as I'm trying to keep up with the four classes I'm taking. It would be great to finish those classes on time in late April and then have the summer off from school. I am also hoping to have less responsibilities at work soon, but in the meantime I'm grateful to have a job that I enjoy and coworkers that I love working with.

Stress and Gratitude

As my oncology appointment next week draws near, I'm feeling more agitated and stressed out. Although my first chemo treatment has not yet been officially scheduled, I imagine that it will begin soon after my Thursday appointment. It doesn't help that I've been getting up at 5am every other morning to drive to Ann Arbor for egg check-ups and that I'm full of FSH and the extra estradiol that my body is producing in response. Hopefully I can get back on a somewhat normal sleep schedule after the retrieval early next week. On a positive note, I got to see progress in my follicles at the appointment on Weds so at least I feel more hopeful that we'll get a few embryos "on file" soon. Writing this is certainly helping me slow down and calm myself a bit. I actually took out some of my anger earlier today by yelling at robots on automated phone directories at UPS and Walgreens- a victimless crime. Of course, then I realized that at least one of those directories had warned me that the call might be recorded for quality assurance purposes. Sorry, UPS!

I'm trying to honor negative emotions that come up without getting consumed by them, and brainstorming a quick list of things I'm grateful for usually helps change my frame of reference if I need it.

What am I grateful for at this exact moment in time? Wonderful people in my life. Sunrises and Sunsets. My hair. The privilege of actually having health insurance, even if it doesn't cover everything. The Kalamazoo community. My doctors. That I don't feel sick right now. Science. Bird songs. Kale Chips. Unexpected gifts. Music. Art. Love.

Follicles ʁ Us

Things are really moving along now. My bone marrow and spinal tap biopsies came back negative for lymphoma, which is great news. I'm on Day 6 of injecting myself with FSH to stimulate extra eggs so that we can retrieve, fertilize, cryopreserve them next week. It's definitely nerve-wracking to have this potentially be our one chance to make our own biological babies, but I am grateful that we at least have this chance. It is certainly still possible that I'll come through chemo, resume my normal cycle, and that we could conceive naturally at some point- but there are no guarantees. Some women become menopausal after chemo, and some don't. Since I'm only stage II, the oncologists said it was reasonable to delay chemotherapy to go through this process, and we are participating in the Livestrong Foundation's Fertile Hope Program, which helps cover a large portion of the cost of IVF for cancer patients. I know that Lance Armstrong has gotten some bad press recently (which he deserved), but I for one am grateful for the work that his Foundation is doing- it's so much bigger than him. So by sometime next week, we will know how many embryos will be waiting for us once chemo is over and we are cleared to transfer one or more of them into my belly to bring them to the next phase of development. That idea will be helpful to hold on to when I'm feeling discouraged, tired, and hopeless over the coming months- my carrot on the end of the stick.

I have to say that I've become rather geeked-out on the science I've been learning about over the last few weeks, although it may be serving as a defense mechanism to keep me from becoming overwhelmed with feelings of fear, anger, and doubt that have been surfacing recently. It's tricky to accept that I have cancer when I don't have any symptoms besides a lump in my neck, and that the treatment to cure it may make me feel more sick than the disease itself makes me feel. That's been weighing pretty heavily on my mind recently. I try to funnel that into some sort of gratitude practice around how good I feel physically right now so that I can appreciate it while it's here, but some negative emotions still surface when I think about the pending treatment that is about 2 weeks away.

I am pretty excited about the photo project that I've started with a fellow art student and will be sharing images from that soon- probably as an external link attached to this blog. Just pulled some Chickpea Burgers out of the oven, so I'm off to eat good food from the Cancer Fighting Kitchen cookbook. Here's the recipe if you want to try them, too!

Ouch

Yesterday's procedures went way better than I anticipated them to be, but now the recovery is more painful than I expected. I'm not taking any prescription pain meds like I did after the last two biopsy surgeries so it's just me and extra strength Tylenol and a bunch of reclining. My lower back aches only when I need to move around, but a rather large area around the port aches pretty constantly plus I have limited mobility of my right arm and my neck until the port gets settled in. In a week I'll go back to the hospital for a "port site check" and hopefully will get my biopsy incision checked at the ENT that day, too. I'm hoping to have bone marrow biopsy and spinal tap results by the end of the week, which will be sent to my oncologist and I'll have to call her to get the results. Or maybe she'll call me when the results come in. The sensations from yesterday's procedures are making me grateful that this will be resolved before I start treatment, so that there will be stages to the different unpleasantries instead of having to deal with them all at once.

Three-Fer-One

I'm back home after my "three-fer" this morning of bone marrow biopsy, port installation, and lumbar puncture (in that order). The anticipation of these procedures was definitely worse than the procedures themselves. I only needed a little bit of sedation for the first two procedures and completely opted out of anxiety/amnesic medication that is fairly standard practice. For example, the nurse I worked with for most of the morning said that she typically administers 300-500mcg of Fentanyl for a single procedure and I only took a total of 200mcg for the first two combined. There was zero sedation or other meds for the lumbar puncture and I got to see the vial of 15mL of spinal fluid after the needle was already out of my back. I was surprised that the fluid was crystal clear- I must've had a different schema of what it would look like. The most painful part of the morning was by far the various shots of lidocaine, and the weirdest part was feeling the pressure and tugging on my chest during the port installation. It turns out that the port is purple, which somehow made me feel better about it, like it's a royal thing or something. It's called a Power Port because it can be used to administer IV contrast for CT scans using a special, fast needle as well as blood draws and chemo infusions. I'm definitely experiencing mild discomfort in the areas where the procedures took place, but am regulating it with Tylenol and a cat on my lap. I'm glad to have this morning behind me and so glad that I remember everything that was done today. It was definitely interesting to learn about the procedures, especially since I will likely have to go through each of them at least once more during this process.

Good News and Big Business

On Monday, February 4, I drove to Ann Arbor with my mom and dad for two appointments and spent most of the day there. My parents were able to come with me, which was a great help- they took notes and asked questions and provided company during the day. The first appointment was at the University of Michigan Comprehensive Cancer Center. We got important news from the hematologist there- the final bit of information from the pathology done on the lymph tissue they took out of my neck on Jan 18. We had been waiting to find out if the sample was positive for the MYC genetic mutation, which would have been bad news, a "double-hit". They'd already determined that the sample was positive for BCL6, and the combination of that with the MYC mutation would mean that it was an extremely aggressive cancer that typically doesn't respond well to treatment. The genetic mutations that are present in my lymph tissues are the ones responsible for making too many cells that live longer than they're supposed to, which is what cancer is all about- poorly regulated cell growth. The pathologists determined that the sample was negative for MYC, which then meant that instead of having a really bad, unresponsive-to-treatment type of cancer, I have the fifth most common cancer out there- diffuse large B-cell lymphoma, which does typically respond well to treatment. The three of us gave a giant sigh of relief in unison upon hearing this news. U of M also agreed that the lymphoma is at stage II based on my CT and PET scans, which continues to be good news.

So it seems clear that I will be going through chemotherapy soon and that the treatment will be hard on my body, but that it is a necessary step to get rid of the unruly cells that started this whole thing. The treatment will include a drug called Rituxin, which "changed the natural history of lymphoma treatment" when it was developed (according to the hematologist at U of M). It was approved by the USDA for use in 1997. Rituxin is a monoclonal antibody that targets B-cells, which have a particular protein called CD20. B-cells are made in the bone marrow and do not have CD20 when they are first made, so brand new, cancer-free B-cells will develop after treatment once the cancerous (and healthy) B-cells outside of the bone marrow are attacked by the Rituxin. The chemo treatment options include Rituxin and the use of other drugs, either CHOP or EPOCH, which is CHOP plus etoposide. I may be part of a clinical trail that includes being randomly assigned to one of these treatments. More on that after my oncology appointment on February 28.

The second appointment that day was at the Center for Reproductive Medicine. I met with an OB-GYN to learn about the process of cryopreservation of some embryos prior to chemotherapy. You see, chemotherapy doesn't treat eggs very nicely so it is wise to get some put on ice so that we can use them later. It turns out that fertilized embryos freeze and thaw better than unfertilized eggs. The Livestrong Foundation has an awesome program called Fertile Hope that subsidizes the costs of cryopreservation for cancer patients, and I've already been approved for that program (big thanks to Sara C. for telling me about it!). So over the next month I'll be going through one cycle of IVF, and then I'll get started with chemotherapy. It feels a little scary to be delaying my cancer treatment, but I feel strongly that having the chance to get pregnant with my own egg(s) later is part of surpassing this situation, not simply surviving it. We've also checked in with the oncologists we're working with and they think it's a good idea based on my age, the new diagnosis and staging, and the fact that I continue to have zero symptoms.

My parents and brother were able to do a bunch of research this week on health insurance (my current student health insurance sucks for this kind of situation), cancer support services, and other financial matters. I am so grateful for their help in navigating the interwebs and automated phone systems to dig up all that stuff while I was at work/school. There are several programs that can help under-insured folks like me to pay for cancer treatment, and so I've now applied for a Rituxin subsidy program through Genentech and some financial assistance through the Leukemia and Lymphoma Society. I'm also applying for new health insurance since the student health plan has no out-of-pocket maximum and also has a limit on how much the insurance will pay out per condition. Considering that a single dose of Rituxin costs several thousands of dollars and that I may need to be hospitalized at times during treatment, it may be easy to max out that benefit.

The next step is that tomorrow I'm having several procedures done at the hospital: a bone marrow biopsy and spinal tap to do a final stage diagnosis confirmation, and the installation of a port in my chest for the eventual administration of the chemo drugs. Tomorrow is going to be a rough day, but I get that it is a necessary step that needs to be taken. My dad will help get me to and from the hospital and will hang out with me while I'm doped up post-procedure. I'm not excited about having a port in my chest, especially so soon, to have such a visual reminder of what's going on. Since I don't have any other symptoms, I can successfully have a few moments each day where I can let the cancer thoughts slip away to the back of my mind. But if I've got a port sticking out of my chest, rubbing on my clothes and who knows what other sensations, glaring back at me in the mirror- it may be harder to escape the reality of what's going on. I imagine it will be similarly tough to see myself without hair, which I'm told will happen around the third cycle of chemo. I'm open to ideas for hats/scarves/etc. that you think would work for me as I'm not in the habit of wearing much on my head other than a beanie in the Michigan winter. I don't plan to wear wigs (unless they are very obviously wigs- like purple or something), but I imagine I'll want to cover up my bald head when I'm meeting new people or am in other situations where I don't want to have to talk about cancer. I've recruited some photo students at WMU to work with me to document the journey that my body is going to go through with cancer treatment and will be sharing some head shots shortly.

This week I chose to drop a few activities to make time to take care of my mental/physical well-being. I resigned from a board of directors where I was the co-chairperson, and dropped one of my studio classes. I will continue serving on another board, taking four classes at WMU, and my part-time job for as long as I can handle those things. It helps me a lot to keep a routine and stay busy. So with at least 6 hours/week freed up I now need to resume some previously suspended self-care habits like meditating, exercising, and eating good stuff. Posting to this blog will be part of that self-care regimen, too, since it helps me process and document what's going on. Thanks for reading!

This is Spinal Tap

Just got back from my first visit with the lymphoma specialist here in Kalamazoo. I'm a bit in shock, but what we heard today wasn't particularly worse than I was expected. The PET scan showed that there are indeed cancer cells in my neck where the lymph nodes were removed two weeks ago and also in the Waldeyer's ring but not anywhere else in my body. At this point, the pathology reports have confirmed that it is an aggressive (rather than indolent) type of B-cell lymphoma, so it's good that it has been identified so that we can treat it as soon as possible. Radiation is not used for this kind of diagnosis, so I will soon be getting a port installed in my chest and will be receiving chemotherapy for about 6 months. Before that begins, I need to get a bone marrow biopsy and spinal tap to finish up the staging diagnosis as well as some blood work and genetic analysis of the lymph tissue that's already been removed. I also need to go through some fertility steps to make sure that I can still pop out a few kids once this is dealt with. I'll write more once this has all sunk in a little more. Please send your positive thoughts into the universe for me if you can, and for all who are in need of them. Thank you.

May you be filled with loving kindness
May you be well
May you be peaceful and at ease
May you be happy
-metta practice.