The Final Stages of Treatment

Well now that I’ve built a sufficient amount of suspense I figure it’s time to finish my post about radiation. 😜 Clearly I’ve already failed at keeping space in my life post-chemo, as I’ve managed to fill my schedule with the coinciding rise of my energy levels.

Anyway, as many of you already know, I decided to move forward with radiation. It was pretty much a choice between two evils and I had to make a decision. I felt much more confident in my new radiologist’s opinion paired with my personal research so I decided to give it a go. Because Duke has had statistically significant success with shorter lengths of radiation treatment and lower levels of doses, my treatment consisted of only 11 sessions, every weekday for a little over two weeks. Other than the discomfort of laying in a body mold (pictured below), I experienced very little short term side effects. After about a week and a half in, I started experiencing a decent sore throat as they had warned me was common. I initially thought I was just not chewing my food enough before swallowing it, ha! Luckily this did not become much of a big deal at all, as my length of treatment from start to finish was fairly short. The side effects are cumulative so the longer you have treatment, the worse your side effects become. Overall, it was much easier than chemo thankfully.

Each day I would drive 35 mins, leave my car with the complimentary valet (more perks if you have cancer!), go in for treatment and be out in less than 20 mins. The experience was efficient and relatively painless, now I just have to pray for no long term side effects! 😁

It’s been about 2 weeks since I finished my last treatment. Pretty wild to think about. As I assumed on the front end of this journey, time always passes whether you want it to or not (in this case, definitely wanted) and I am so grateful to be on the back end of this road. Whenever I talk to anyone about being out of the woods and done with treatment, I truly am so grateful and in awe of the support I had. People often tell me I’ve been so strong and positive throughout it all but that part’s been easy when you’re set up for best case scenario. My heart aches for all those who have it much worse than I did. With the exception of a crappy hospital stay, everything went pretty smoothly. Obviously having any kind of cancer is not ideal but I feel so lucky to have had the people in my life that dropped everything to support me; other than making it through the physical pains, every need of mine was met in some way or another.

“Now to him who is able to do immeasurably more than all that we ask or imagine, according to His power that is at work within us, to him be the glory.” Ephesians 3:20-21 Many of you have commented on my faith throughout this. As I have mentioned before, I am eternally grateful to have a God whom I can cast all my fears and worries onto. I was talking with a friend the other day about how crippling fear is. It infiltrates so much of our lives and brings forth endless amount of damage physically, emotionally, and mentally. Throughout this experience I was able to see how God had set me up with all that I could possibly need, both before and then during it all. What a petty thing to worry about my day to day discomfort when there is so much else going on in the big picture. When you are able to take fear out of the picture, it is incredible what doors open. And once you’ve been through something that you know could cause significant fear, it’s hard not to worship the one who takes that burden from you!

So here’s to all of you, who stepped up in one way or another and helped me in more ways than you’ll ever know. I will be forever grateful.

Here’s my glamorous cradle, that held me in the exact same position each day. I am grateful to be done chilling in this guy!

Here is a counter full of complimentary snacks and drinks for cancer patients. Very thoughtful but unfortunately did not have a single option that wasn’t full of sugar or processed junk. Nutrition is not stressed enough the cancer center 😁

I just thought this was funny haha

It’s funny how you often see a division between believers and those who lean on science until cancer is involved! It was comforting to see signs of God all around the cancer centers.

Here was the first day where they marked me all up to make sure I was lined up correctly in the machine. I had to keep a few stickers with X’s on them on my chest throughout the duration of treatment. I was grateful they weren’t permanently tattooed dots like they used to do in the past!

To radiate, or not to radiate… (Part 1)

As many of you know, I’ve struggled with my decision regarding whether or not to pursue radiation post-chemo. The doctor initially told me I’d have six cycles of ABVD (two chemotherapy treatments a cycle, 12 treatments total) followed by two months of radiation. This was back when I had very little personal experience medically and took everything doctors said at face value. Now, having had an early clear pet-scan, I was questioning why radiation was still the obvious next step. To me, not a doctor, I didn’t understand what the point was in pursuing targeted therapy (radiating specific areas) if my whole body was supposedly “free of active disease”. What would they be targeting? It didn’t help that my oncologist, like I’ve mentioned before, didn’t make me feel like she was exactly tuned into my specific case but rather, going through the motions. I never thought of myself as someone that questions authority figures and researches extensively but I have definitely gotten to that point in my life, as I’ve now had much more interactions with the medical field and know that many important things fall through the cracks; that much of what appears to be an objective field, is in fact very subjective.

So, after discussing it with my oncologist, I (as well as Paul, who went to the appointments with me to give me a second brain to process the information) felt really unsettled and unsure of pursuing radiation. I waited to solidify a decision until going to the radiologist referral, as they are a specialist in the field and have (or theoretically should) more knowledge regarding the pros and cons, reasons for pursing radiotherapy, etc. Unfortunately, this left us feeling even MORE unsettled. My gut had been telling me that more medicine, more treatment wasn’t necessarily more HEALING for my body but the radiologist really stressed the importance of doing everything to get my cure rate up, as a relapse of lymphoma is much less desirable than getting a second cancer. Yeah, I said it. Second cancers are better than lymphoma returning! Do you see my reason for not knowing which path to choose? The concept of choosing the lesser of two evils rings very true for my situation. Unfortunately, it wasn’t even a clear cut decision on which was was the lesser. Hence my confusion.

I don’t remember all of the exact statistics but I was initially told my cure rate would be about 90% after just chemo, and about 95% after radiation. My concern regarding radiation was entirely about the long term risks, which I was told would include a 15-20% increase in chance of breast cancer, 30% chance of developing thyroid issues that would necessitate removal of my thyroid and therefore require me to take medicine daily for the rest of my life, as well as an unspecified increased risk in throat cancer, thyroid cancer, lung cancer, cardiovascular disease and who knows what else, the list was long. For just a 5% increase in cure rate, this seemed like an awful lot of risk to take on. I asked my radiologist for some specific statistics regarding my particular diagnosis but he wasn’t very aware of the current research. The best thing he did was provide me with a second opinion referral to his colleague on the main Duke campus (I’ve been going to Duke Raleigh for treatment as main Duke is in Durham). As Paul put it, it felt like we were asking a car salesman why we should buy a car so I wasn’t positive this second opinion radiologist would give me any other information but figured I might as well cover all my bases.

In the week between, I did as much personal research as I could, including studying as many academic articles on studies done regarding this dilemma (thank you Samantha and Adam, for helping me with this overwhelming research!), as well as looking into alternative treatments and integrative medicine. I was hoping to find an integrative medicine specialist for a second opinion as well, someone who believes in medicine but also in other things like nutrition, the body’s own ability to heal, etc. but was unable to find this type of service. It appears you’re either fully in the medicine camp, in the integrative camp which follows the oncologist/radiologist’s lead but adds alternative treatments to help support your body (vitamin C therapy, detoxes, etc), or you’re completely in the camp that advocates against modern day medicinal treatment but has no research to back it up, as there’s never going to be the same money available to fund it, like the pharmaceutical companies have access to.

The biggest problem with making cancer treatment decisions, is that no one case is exactly the same and the field is ever evolving (thankfully). There’s not an exact formula with consistent results which therefore leaves a certain window of unknown. My exact diagnosis, early stage (stage 2) Hodgkin’s Lymphoma with a classification of bulky and unfavorable (due to the mass in my chest measuring larger than 10 cm), has actually been the focus of several recent studies, most notably (to me) one published this year by Duke, focusing on the amount of radiation given; as well as studies on whether or not it’s actually warranted, and many other questions regarding variations in treatment. This discovery at least comforted me in my distress over the inability to make a decision; unlike the vibe I got from my oncologist and initial radiologist that the decision was pretty cut and dry, move forward with radiation. It appears people all over the world are questioning the current standard of care for my specific diagnosis.

That being said, there’s not been a study done yet that has produced a higher cure rate without radiation than with. I met with the next radiologist who thankfully was much more informed and knowledgable in the area of lymphoma. He framed it as this, I’m the captain of a ship no one wants to captain and unfortunately I have to make a decision of what’s best for me, he can only provide me with the statistics on the risks and benefits. He gave us much more specific stats, including that with my particular diagnosis, my cure rate with chemo was actually just around 75% and radiation brings it up to about 88-92%, a much different picture than I was initially given. He also told me of a study that showed that participants who didn’t pursue radiation and had a relapse of the initial lymphoma, always relapsed in the bulky area. This particular study produced a statistic that the clear pet scan results had a false positive rate of about 14%, meaning what was considered a clear of active disease scan, actually turned out to still have active disease in the area the bulky mass had been. This is most likely due to the amount of scar tissue that remains post-chemo treatment, which masks the active cells on the scan. This radiologist left us feeling much more comforted in the ability to respect his opinion (which was that if he were me, he’d pursue radiation).

This paired with my personal research, made it clear that radiation would definitely increase my odds of not relapsing and brought me to my decision now, whether I wanted to chance my lymphoma coming back, or risk the occurrence of the aforementioned issues.

To be continued…

Wait a second, the house burnt down!

I think my oncologist is very competent and I know she’s respected in the field. That being said, I don’t feel like I know her very well because, for the most part, it seems she’s trying to set personal records on quickest time in and out of the exam room. I definitely don’t feel like the 88 seconds I get with her are worth the $75 copayment but hopefully the behind the scenes work warrants the mounds of medical bills I’ve aquired.

Throughout this process, we’ve reviewed my side effects after each treatment, discussed what prescription refills I need, and exchanged a few words about the unfortunate loss of my hair but that’s been about it. I’ve never felt like she was really clued in (or attuned as I would say in the therapy world) to my case specifically (which was affirmed various times that I’d be asked about side effects I’d never had or questioned about when my next treatment was going to be even though I was having treatment the same day I’d see her) but this visit I left feeling heard and encouraged. I actually left feeling like she had given me very wise words.

I was really struggling with the decision of whether or not to do radiation (more to come in next post), which she had given me the text book response on the pro-radiation stance in previous appointments, and I also let her know I seemed to be more emotional in the past few weeks since my last treatment but wasn’t really sure why. I supposed it could be the stress of the indecision over radiation but it just seemed to be more than that, often times tears coming in completely non-radiation-related moments. She quickly interjected and normalized this for me, telling me that it’s very common for post chemo patients to experience this surge in emotions. She said once you receive your diagnosis it’s like hearing your house is on fire; you jump into fixing mode, are plunged into treatment so fast and spend the following months/years fixated on making it through treatment. And then, once your scan is clear and treatment ends, you look back and really take in that the fact that it’s over and feel like your house burnt down.

I was amazed at how much this clicked for me, how much sense it made. On the one hand, I’m ecstatic to be done having these awful chemicals pumped through my body bimonthly; while on the other hand, I have an overwhelming feeling of loss and sadness for myself. I allowed myself as much space as I could throughout this journey to feel what I was feeling, accept what I was going through, and process whatever might come up. But it never occurred to me how much would come up once I was out of the woods, not devoting energy to make it through each day, each week. While you’re manning the firehose, trying to keep the house standing, you don’t have a lot of time to stop and process all that is happening, all that is burning. This period of grieving my experience only lasted those few weeks but it was so helpful to understand where it was coming from.

On a lighter note, I can feel my body getting stronger every day. I’ve been taking the dogs for walks 2-4 miles a day and it feels amazing. The weather happened to change the exact week I started walking so it’s been incredible to have sunny, non humid days where I can walk for no purpose other than to feel my body building strength, rather than stressing about how weak I will feel by the end of it. Im currently going through a minor setback, as I had to have my wisdom teeth pulled and a root canal this morning (figured I should find something else to rack bills up on 😉), but for the most part, I’m heading in the right direction!

Today, I am thankful for Paul and his beautiful kids, Bryn and Luke. They kept me company almost every day of this journey, putting up with my crankiness and lack of patience while I was feeling crappy, and accommodated me and my modified needs day in and day out. Whether it be dragging a chair and umbrella out to the field for me so I could tag along on their active adventures, completely changing their diets to what I would also be able to eat (and Paul cooking it all for me 🙌), playing with Matthew  to spare my energy on days that I could actually watch him or just generally living life at a pace that allowed me to be included, they stepped up and I will forever be thankful for all that they did for me. Their support and unending efforts to ease my pains and lighten my mood helped the days pass and kept my spirits lifted.

More to come on my trip to Disneyland and decision on radiation in next post!

Last chemo!

As I stood in my closet this morning trying to figure out what to wear to my last chemo treatment, I was hit with a mixture of emotions. Looking at what I’d worn to previous treatments (because obviously I can’t wear the same thing to chemo twice), I started remembering each treatment and realized it was snowing when I went to my initial appointments and here I was, ending the summer already.  I was suddenly flooded with a range of just about every emotion you can have, from happiness that I’m at the end of this, to sadness over how much time I’ve lost. Most of me feels like I haven’t lost or wasted this past year because I’ve had so many positive things come out of this experience but there’s definitely still a small part of me that feels that way since I’ve been so limited physically and mentally.

On top of this, I’ve also been experiencing almost conflicting feelings internally versus what those around me expect me to be feeling. All week I’ve been inundated with texts, calls, messages, and conversations with people who are overjoyed that today is my last treatment yet inside, I was still mostly consumed with dread because, let’s not forget, my last chemo treatment is still chemo. Obviously I’m happy to be at the end of treatment but I can’t help but have the typical anxiety and resistance to what is going to make me feel crappy all over again.

One of the best lessons I learned in grad school was the concept of holding a mixture of emotions all at once. Most people assume you’re either happy or sad, feeling “good” or feeling “bad”, yet in reality we will all go through periods of time that are plagued by emotions that fall on both ends of the spectrum. My first real experience of this was a few years ago when my grandma passed away the same week that I had my graduation from grad school. It was such a challenging time, mourning the loss of someone I loved so much, yet also a joyous time where I was supposed to be celebrating all of my work towards earning a Masters degree. It was then that I fully comprehended the concept of allowing yourself to feel happiness and pain concurrently and that is what I keep finding myself return to this week, as I anticipate feeling all of my usual side effects yet also celebrate the fact that it’s the last time I have to go through all of this.

So today, as my last toxic poison pumps through my port, I’m feeling nauseous and groggy, but also grateful, excited and hopeful. I have more to say but can no longer think clearly so this is it for now. As always, thank you all for your support and encouragement!

“Out of difficulties grow miracles.” 1 Peter 5:10

With my great nurses at the cancer center! They were always the highlight of treatment, despite being in the dreaded infusion room. So grateful for their loving care!

Am I where I’m supposed to be?

Oh, how I long for the days I will be able to wear a bra again. Lucky for me, they’re coming up soon! I’m now four days out from my last treatment and my normal aches and pains have started up, right on track. It’s amazing how different each person’s “cancer journey” can be, what with all the varying types of cancer that exist in our (chemically laden, consumer driven, nutrient lacking) world we live in and subsequent varying roads of treatment.

Now that I’m on the back end of this experience (!!!), I’ve grown aware and accustomed to my body’s surprisingly consistent reactions to all the toxins it’s trying to combat. The day of treatment, I feel somewhat nauseous, drowsy and generally unwell. The next two days are surprisingly not the worst, mostly overpowered by fatigue and shortness of patience/increased feelings of irritation. Halfway through day 4, usually Monday as I have treatments on Friday, is when I begin noticing the return of the ever present bone aching in my chest and lower back. This is a side effect of my white count boosting shot (Nulasta I believe? Or Nupagen, can’t keep them straight) that causes an increase of bone marrow production, which occurs most in your sternum and lower back; hence the chest aching. I’ve learned it helps to not wear restrictive shirts or bras, which put pressure on my sternum and increase the aching, but I still have to rely on my good friend, Percocet, to help me make it through the weeks. Luckily, my mouth pain seems to be on the same schedule as my bone aching so at least the percs are killing two birds with one stone.

Today as I was trying to configure yet another outfit that I could wear without a bra (not always an easy feat to accomplish), I realized that next week I will receive my last treatment and not have to get this shot again. It’s odd to think of how much my life has changed and how much I’ve been forced to adjust my day to day life; in a way I’ve grown attached to this piece of my life’s journey and pretty soon, will have to go back to functioning like a healthy person again. Don’t get me wrong, I’m more than thrilled to regain control of my body and life, I just thought it was noteworthy to share the odd feelings of having to figure it all out again. My job for the last six months has been to figure out how to make it through what is now nearing an end! That’s a big focus to remove from your life (again, one that I am stoked to remove) and one that brings up all the typical questions of life post-college/post-gradschool/post-lifebeingstructuredandlaidoutforyouyearbyyear. Not surprisingly, as I near the end of treatment I’m having all of the usual questions pop up when you face big transitions in life. What now? What is next for me?

I came across this scripture in my reading today, “Rejoice always. 
Pray without ceasing.
 Give thanks in all circumstances.
 THIS is God’s will for us in Christ Jesus.
” (1 Thessalonians 5:16-18) and it gave me such peace. I, as I’m sure many of you can identify, often find myself trying to control circumstances and fretting over things like what I’m SUPPOSED to be doing, trying to answer questions like what SHOULD I be doing, wondering if I’m WHERE I should be, have I MISSED something, and the list goes on. And it made me wonder, why do I spend all of this energy stressing over what route I should be taking, what steps I should be making, when I have a God that’s so much more powerful than I will ever be and so much more capable of laying out a purposeful path for me? Regardless of what the situation is, it’s comforting to remember that God is sovereign and whatever is happening, is in His will. It’s amazing the beauty that unfolds when you’re not fixated on fixing or planning but rather on thanking and just being.

Today I am grateful that this weak and weary body can just sit here, enjoy the rain and not worry about trying to hold the world on my shoulders. I know that someday I will be able to look back and understand the plan so for today, that’s more than enough.

Cancer free is the way to be! 😜

This week I am going in on Friday for my 10th of 12 chemo treatments. Rounding the final corner! It’s finally starting to feel like I am getting close to being done with all of this, which is a welcomed feeling. I’m sick of being short tempered because I’m so tired and frustrated with my limitations so I am looking forward to returning to feeling healthy and capable. I have learned a lot about accepting help though!

Last week I went in for my pet scan and I have great news to share. There was no sign of active disease! The only thing on my scan that was abnormal or stuck out was the scar tissue in my chest from the initial mass that was growing there but my oncologist warned me that this would likely be there before I even got the scan and said its totally normal. After only 9 treatments, to get the results back that my scan was totally clear is best case scenario. I was so relieved to hear that treatment has been effective and that my chemotherapy won’t be extended. Praise God! Then I had a moment where I was like shoot, I’m no longer going to be the bald cancer girl pretty soon which means people aren’t going to automatically be nice to me and I won’t get my way all the time anymore! 😉 Cancer has it’s perks but I will definitely be thankful when this journey is over.

Speaking of being treated differently, this whole walking around with a shaved head thing has been a pretty unique experience. I definitely get mixed reactions from kids, as to be expected, but overall when people do comment, they’re very encouraging and affirming. It’s made the whole cancer thing a more frequent topic of conversation but this has been a cool way to make connections and bonds with people I otherwise wouldn’t have spoken to. By far the most interesting trend I’ve noticed is how much more comfortable black women are in commenting on my hair. I really hope this doesn’t come across as rude or stereotyping; it’s truly such a significant difference in reaction, so consistently, that I had to share it. Most everyone I actually know has made some type of positive comment regarding my shaved head, whether it be about the shape of my head or how my eyes stand out, etc. but when it comes to strangers, 95% of white women either look at me twice and look away uncomfortably, or have some type of “aw, that poor girl has cancer” reaction. I really don’t care either way, I know it’s not common to see someone my age walking around with a shaved head and many people haven’t had a lot of practice in responding politely to situations that catch them off guard so I’m not taking it personally. But the best part has been the reactions of so many black women that are complete strangers yet go out of their way to compliment me and tell me how well I’m pulling it off. Every single day I’ve been stopped by at least one person exclaiming how great I look with a shaved head and that I better keep rocking this hairdo, that I don’t need to hide under a wig and that I look amazing. Generally I’m not someone that cares much about external opinions, positive or negative, but going through such a drastic change (shaving my head) in a weakened state of health, has definitely left more me appreciative than normal of outside affirmations. It’s so drastically different to see someone’s face fall with pity vs. someone’s face lighting up with an almost proud type of response for me.  My only guess as to why there’s this significant of a difference in responses so consistently would be that it’s more common and accepted for black women to wear their hair short but regardless, it’s been an awesome, empowering experience to be built up and encouraged by so many complete strangers.

Now that I have the scan results showing that there’s no longer any active cancer cells, I have to make the decision regarding whether or not I will do the radiation that was initially planned. My oncologist only called me briefly with the results so I will talk with her more at my next appointment but she did say that she will give me the referral to the radiologist regardless and that she always recommends bimodal treatment over just chemo or just radiation. I am obviously not a specialist in the field of oncology and I do respect my doctors but I also know they tend to lean on the end of more medication/treatment/etc. than may be actually necessary or beneficial long term for my body so I have some research to do and tough decisions to make. Several people have told me I will lose my thyroid and be on medication for the rest of my life as a result of the radiation, which would really suck. I also want to make sure my rate of recurrence is as low as possible, though. If you have any insight or advice, or know anyone that would, please let me know your thoughts! Prayers for guidance and discernment are always welcome.

Below is a verse I find myself returning to in times of turmoil and decision making. I found it while working in a stressful position years back and have found comfort in the fact that ultimately, I’m not in control of creating a perfect plan for my life. What is supposed to be will be, as long as I continually surrender and let God do his thing. As always, I am grateful to have a God that loves me no matter what, and creates a much better story for my life than I’d be able to on my own.

“The Lord says, ‘I will guide you along the best pathway for your life. I will advise you and watch over you.'” Psalm 32:8

Simple but oh so true!

The latest and greatest!

It has been a roller coaster (as usual), last week was great but this week has been a little tougher. I guess that’s to be expected when you’re on an every-other-week chemo schedule. I went in for my 8th round of chemo last Friday (6/12) but my white blood cell count was too low so I was unable to receive treatment (which is not a good thing because then I’m pushed back another week and walking around with no immunity to fight things off). I also had been feeling a cold coming on and that night had a fever go up to 100.8 (101 and I have to go in/potentially be hospitalized 😁). So this was very scary and stressful but it went down right away and I woke up feeling much better. Back to the good part; lucky for me, the next few days were going to be super sunny so Paul and I decided to take advantage of me being able to be outdoors by taking the kids to the beach for the day! As most everyone knows, the ocean on the east coast is a lot warmer than on the west coast so I had a blast floating and swimming in the waves for hours. And then my friend Kristen Fuller (I guesssss I should say Kristen Sandler now) came to visit the next day with her husband, Ami, so I was also able to have more energy to hang with them since I had skipped treatment.

While Kristen and Ami were in town, we decided to go by the wig shop just to check it out since my hair had been getting really thin and was no longer looking good, up or down. As I’ve mentioned before, my hair has been a big stressor throughout this whole process so this trip quickly became overwhelming. A couple of months back when my hair loss had suddenly increased, I had had a moment of being really overwhelmed, worrying about having hair left for the wedding I was going to be in the following month. A sweet friend of mine from church had calmed me down through text, sending me a picture of her gorgeous self with a shaved head and offered to accompany me to the wig store if the need arose. Flash forward to this last week, I had many people (thankfully) that I wanted to bring for comfort but also didn’t want to storm the shop with a full crew so I figured my three would be an appropriate, non-crowdish number. After the ladies in the shop gave me the lowdown on the process, they set me free to pick whichever styles I’d like to try. I had held it together til this point but now faced with all these fake heads wearing hair that was not mine did not leave me feeling too great. At this point in my life, I haven’t even died my hair before and now I’m supposed to pick out a totally different look? As I’m standing there, trying to hold it together, in bursts my sweet friend! She had no idea I was there yet just happened to pop in the shop right when I needed that extra push to stay positive. Talk about a Godsend!

After hugs and a quick pep talk, I was in the chair with a hair net on, ready to try on some fake hair! It was still overwhelming but the ladies at the shop were very sweet and helpful. After about 45 minutes or so, we had narrowed it down to something that didn’t feel too strikingly foreign to me. With the wig picking under my belt, I now felt more confident about the prospect of shaving my head. When we realized game 6 of the NBA finals was on, we figured why miss the chance to crack a joke about losing a bet? So kind of impromptu-ly, I decided it was time for the hair to go.  Paul gave me about 3 seconds in the bathroom before he chopped my pony tail off, told me to stand in the tub, and went for it with the clippers! When I turned to face the mirror, I had about two minutes of emotions where I was not on board with posting a picture and joking about losing a bet. In fact, I think the first words out of my mouth were, “I don’t think I want to post a picture tonight.” But in the time it took for Paul to shave his head I was over it and SO relieved. My wispy, stringy, thinning hair was gone and my head felt great.

Everyone has been so incredibly supportive of my two new looks and with this awful, humid weather, it’s been amazing to either have no hair or be able to whip my fake hair off when I do get hot. In addition to this huge change, Paul had been thinking about getting a dog for his kids and I had mentioned the idea during my month of not working, specifically in regards to the benefits of the companionship so after a random chain of events, there’s now a crazy five month old husky running around the house! He’s really smart and has a great disposition, already a great cuddle buddy (when he’s finally tired), but is also teething and not house trained 🙂 So all in all, I had a very eventful week but the changes have been welcome! It’s nice to focus on something new in the midst of all my physical junk.

When I initally began this, it was Father’s Day and my intent was to write about my appreciation for my parents as my gratefulness piece of the post. Thankfully, I still appreciate them even though it’s taken me 5 days to finish writing one entry 😝 My parents are my two biggest cheerleaders and I’m so lucky to have grown up with such amazing unconditional love. They’ve supported and encouraged everything I’ve attempted and are so much of the reason I for why I can approach struggles with confidence. They welcome all of my friends into our home, providing not only for me but for anyone that comes through the door, at any hour of any day. Working in the field of counseling has shown me how much your childhood and family influences who you are and I am eternally grateful for the life my parents have given me. Love you guys!

Assuming his nightly position 🙂

Bald is beautiful! 😉

Check out those paws!

Grace and Gratitude

It’s been awhile since I updated this, not sure why since these days I’m not doing much these days! I did have a busy couple of weeks there at one point, since no one plans on being hospitalized and it came right before a trip back home for a wedding. I’m so thankful to be out of the hospital and now taking every measure to not come in contact with sick people that I can! I was allowed to go home on a Monday and had a short recovery period before I was flying out to Santa Barbara that Thursday. My body definitely felt like it had been run over by a truck but I was really grateful to be able to still make the trip and be in my friend Claire’s wedding. She’s been a close friend for a few years and I would have been really bummed if I couldn’t have made it out for the wedding after all this planning. Paul traveled with me which was really helpful, eased my stress and allowed me to do a lot less (like carry bags, etc.) Unfortunately, I wasn’t able to see many people while out in California, which was really tough for me as I usually try to cram as much into my schedule as I can. God is definitely being firm in teaching me the lesson of slowing down.

This past week has been pretty hard. I’ve really struggled with feeling stagnant in all areas of my life. Between being sick myself and the boy I nanny for being sick, I had about a month straight where I couldn’t work and I think it caught up with me this week. It’s really hard to sit around, not being able to do anything because you’re too weak physically and/or don’t feel well. I’m also still working with a chemo brain here so it’s not like I can even be productive mentally; I forget everything I read or hear or don’t have the energy to process the information to begin with. I found myself repeating over and over, “I just want my body back. I just want my body back.” This led to a lot of anxiety and restless nights, as well as just discouraged emotions in general. I knew for my sanity and for my health I had to get out of this funk but when all of your resources are low, it’s tough to change your mood

I don’t know what triggered it (can’t remember of course) but thankfully I had a moment where my perspective changed and I was able to look at this season in a new way, more as a challenge to be the best ever at having cancer and going through chemotherapy. What if I approached it as my job to do this the best I can while I have to, rather than focus on all of the things I can’t do? Yeah, I’m racking up more bills than pay checks. I’m sitting around more than moving. I’m doing a whole lot of nothing when I have all of this time on my hands for the first time in my life. Who cares? Maybe I’m supposed to be super awesome at doing nothing and having patience in the huge voids. I’m not the type of person that feels like I have direct conversations with God but I can definitely look back and know His hand was in everything I’ve been through and I am always thankful for what I’ve experienced in my life because it’s gotten me to where I am today. Why is this period any different?

I went to a Mary and Martha party that my small group leader, Angela, co-hosted over the weekend and bought a beautiful pitcher that says “Grace and Gratitude” on it. At the time, I was in the middle of my funky week, trying not to pout about my fatigue and lot in life. Just a few days later, those words have really stuck with me. I need to give myself some extra grace throughout this process, ease off on feeling pressured to be productive, and return to finding things to be grateful for in my life. I know one thing that’s been at the forefront of my mind throughout this experience; I am so grateful to God for bringing Angela into my life at the beginning of this season. For the first time ever, I was joining a small group that would actually extend over 9-10 months. I was excited because I feel like ten week studies never give you time to really get to know the people but little did I know that I would be diagnosed with cancer the next week and undergoing treatment for these exact ten months. Angela opens up her house to us all every week and makes you feel as at home as possible, but she has gone way above and beyond that for me throughout this all, sitting through countless hours at the hospital with me, giving me vitamins and other things, and genuinely being such a strong woman of God that I can’t thank her enough. She is someone that doesn’t ask if you need help, she just gives it. She is so encouraging and supportive and already such a great friend of mine. So today I am thankful for Angela!

Me and Angela during my hospital stay 🙂

One of the girls in my bible study is a 2nd grade teacher and her super sweet students wrote all of these letters of encouragement, telling me stories of when they had courage to inspire me to have courage while in the hospital. It meant so much to me that they worked that had and it brought tears to my eyes!

We were able to stop by a favorite winery of mine on the way up to my parents

Sunset in Santa Barbara

Claire’s mom, Claire, me, and my parents at the wedding

A couple of the bridesmaids!

Bustin outta here!! (soon, hopefully)

Well hallelujah, I made it through the weekend so now I can at least watch Live with Kelly and Michael while I sit here! AND they’re broadcasting from Disneyland, which is one of my favorite  places to go. My first thought when it came on was that if I have to shave my head, someone is definitely taking me to Disneyland. I’m not saying I qualify for a make a wish trip or anything but someone, somewhere is taking me to Disneyland if this hair goes.

Anyway, the night was much better than yesterday. I had a very sweet nurse, which makes all of the difference. I was still woken up a few times but that’s ok, she was good about giving me meds to help me fall back asleep. Here’s a funny story from earlier in the day yesterday. I told the oncologist how hard it had been to just be getting my normal prescriptions (i.e. Xanax at 4 am when I can’t fall back asleep) because they keep saying it says every 8 hours instead of every 4, etc. Basically, it’s taken an hour to an hour and a half to get a pain killer or anxiety med each time cus something’s wrong that has to be changed or they’re just busy. The on call oncologist then says she’ll just double all of what’s available to me so I won’t have to be waiting for approvals if I need more. Fast forward to 11am when I have chest pain from the bone marrow being produced from the white count booster shot, I ask for some Percocet and also Xanax, so I can just sleep since I didn’t the night before. Without looking in the cup, I take them and actually manage to fall asleep. Very, very woozy and my limbs felt super heavy but I was more fixated on getting the sleep in.

Fast forward to about 6 hours later, when I decide to ask for just a Xanax (premptively, to keep my stress down since at this point I’m realizing how long I have to wait to get them, which if you’ve ever had anxiety, you know being patient for an hour is not fun). I’m told I’m only allowed one dose every 8 hours, so again I’m arguing for just the prescription I normally have. By the time I’m given the Xanax, I need the Percocet as well so she hands me a cup of two Xanax and two Percocet. Woah! Way, way too much. So I take out one of each and say that’s all I wanted, and swallow them. I’m then told it’s all or nothing so I literally HAVE to take the other two. So I either can’t get them to give me my prescriptions or now I’m being forced to be drugged out. I was like what in the world?! She explains since they’re narcotics, the dose isn’t modifiable. So I’m looking at her, telling her that’s way more than I need and she’s sticking to the protocol that basically, it’s not an option. Now I realize why I was so out of it earlier that morning! So I just popped the other two under my tongue til she left and took them later. I’m sure that’s against the rules but frankly, as we all know, I’m not having a lot of faith in their rules that seem to bend and change depending on the nurse, who changes every 12 hours. Just thought that was a funny change to share from yesterday’s inability to get my meds! Swinging pendulum in here…

Speaking of nurse changes, I lucked out again and my day nurse is very sweet! Definitely makes it or breaks it for you in here. More good news, my white count is up to 1.9!👏🎉🙌 Unfortunately, my neutrophils (disease fighting part of my white blood cells) are still low but they’re doing more bloodwork at 2 hoping I can get out depending on that, and if they’re still low my oncologist said most likely tomorrow. Everything is going in the right direction finally so I am doing much better. Thank you all for your prayers and support!

“You hear, O Lord, the desire of the afflicted; you encourage them and you listen to their cry.” Psalm 10:17

Trying to get some sun while I can! 😜

Momentary rant!

I try to be grateful in all that I do and keep my perspective on everything positive, as I know my condition/prognosis/situation could be so much worse but sometimes I fail at that. Now on my third day in the hospital, it’s hard to keep my patience with the medical system because there are so many inconsistencies, sloppy mistakes and general frustrations that occur that shouldn’t. I know it’s impossible to specialize in everything and know everything but I’m talking about simple, sloppy mistakes like me having to tell the nurse I already had the shot she’s about to give me, which this time is actually logged into the computer she’s working on. I’ve also had to gather all my patience that’s accessible, as my IV beeps incessantly and the nurse station yet again says they’ll send a nurse down and then 45 minutes later still hasn’t. I’m not trying to get sympathy or pity, but I do have cancer, a fever, and really bad nausea from these precautionary antibiotics I’m receiving while I wait for the cultures to come back. I don’t have a lot of resources left to devote to tuning out a loud beeping IV. I’ve now learned how to restart the drip, to make sure it’s completely empty before I even bother calling the nurse, and turn it off while I wait for them to get here. Through all of this, I have been appreciative of the work they do because I know they are overworked and busy and I have not complained a single time (to them 😉). Several times throughout my stay, I’ve had good friends step out to finally find a nurse for me, only to find 2-3 standing around at the nursing station. Still no complaints, I’m not a nurse and I don’t know what they might be doing that is probably (hopefully) prioritized for a reason.

Then this morning at 3 am, my IV starts beeping. I call the nurse station (as I’m supposed to, because I asked to make sure I wasn’t double notifying/ bugging them if they had something else that told them automatically already), no one comes as promised, call again, this time leaving the beeping so she can see the notification on the machine that says there’s an air bubble in the line and then after awhile, still no one comes. So it being 3 am, me being sick and tired, I turn it off and roll over to go to sleep. I know its just fluids, not medicine and since I pound water all day, I’m not concerned. Frankly, it’s me or the IV at this point.

I then struggle to fall asleep, so I take one of my super low dose Xanax pills, that my oncologist prescribed me for sleep, and that is the same medicine and same dose that the hospital nurses have administered during my stay here. Yes, I’m sure they’d prefer I ring in and wait an hour for them to come administer it themselves but frankly, it’s been on my table with all my vitamins amd supplements, as it has been my whole visit, and at 3 am, I’m not too interested in requesting anything else.

So then my nurse comes in to wake me up at 7 am for shift change, at which point she discovers I’ve turned my IV off. I explain why, no apology from her just a stern, “call my line directly next time.” (Which I had done a couple of times earlier in the day, had less luck at reaching anyone, and also couldn’t see the number across the room on the board in the dark (because it is 3 am after all). She then moves on to confiscating all of my vitamins and supplements (Xanax as well obviously), and gives me a stern, “oh no, oh, no no.” talking to about having all of these things that I’ve had for three days and that no one told me I couldn’t have. She comes back with the new nurse after taking my stuff, they lock it up in the cabinet across from me and the new nurse gives me the same cranky face, rude chastising chat about trying to I guess support my body with healthy things, that have never needed approval before. I’m tired, I’m sick, oh and I have cancer, but I try to have my patience as I know nurses work hard. I’m told they’ll all be checked and have to be approved later whenever the hospitalist can make his rounds. Cool, thanks.

Luckily for me, the on call oncologist at the cancer center made a quick pop in just an hour later to check on me. I tell her my physical ailments and then mention that I need my vitamins back, with a brief summary of what happened and she immediately stands up and puts a note in the computer to approve everything I have, sight unseen. Oh, also while rolling her eyes. She then asks how I slept, so I told her the Xanax story and mentioned that I didn’t sleep a lot of hours and now don’t have my Xanax to help me go back to sleep so she immediately puts an order in for an Ativan IV drip to put me right out and tells me to ask for her specifically if I need anything the rest of the weekend. Thank you! I also told her I stopped taking Tylenol last night for the headache my nausea medicine gives me because the hospitalist told me they won’t know if I have a fever, which makes sense so I’m not complaining, just relaying all my facts as I’ve learned is helpful to keep all my nurses and doctors on the same page. She said keep on with the Tylenol if I want, as it won’t hide a significant fever which is all that matters. I try to politely tell her I’m struggling with who I’m supposed to listen to and all of the inconsistencies, to which she points out she’s an oncologist so just listen to her.

I’m not trying to hate on nurses at all, I actually started this rant initially to get to the point about how appreciative and thankful I am for the nurses and oncologists at the cancer center because they really, really work hard to make me as comfortable as possible throughout this journey. I’m low on sleep and now (an hour and 15 mins later) still waiting for a hospital nurse to come unlock my vitamins and start my sleeping meds so please give me some grace with my venting. I’m continuing to learn how important it is to advocate for yourself and stay on top of what is supposed to be happening to your body. I’m excited to get my bloodwork done (which got skipped on the last nurse’s shift somehow so the oncologist put in an immediate order for that as well) to see if my white count is up high enough for me to be discharged and looking forward to leaving the hospital.

On the bright side, I have these two beautiful bouquets from my church and the Welbaums waiting for me at the nurse station for when I’m discharged!