“A puzzling picture”

I had my Day +100 follow up at NIH a couple weeks ago.

Everything went well — the flights, the labs, the pulmonary function test, the electrocardiogram, the echocardiogram, and the bone marrow biopsy.

The breathing tests showed that my lung function is just about as good as it was before transplant; this actually surprised me quite a bit given I haven’t been exercising at all. I also got most of the lab results before leaving NIH which were all good, too. I did have to wait about 10 days for my chimerism results (remember…the percentage of my blood/bone marrow that is Shaun’s vs. mine) and for the results from the bone marrow biopsy.

When I had the bone marrow biopsy done at Day +30, the results were good. They didn’t see any of the abnormalities in the bone marrow which prompted the transplant to begin with and my chimerisms were coming along nicely. There are multiple aspects they measure when doing the chimerism test, two of which in particular we’ve been paying attention to — the CD3 (T lymphocyte) chimerism and the myeloid cell chimerism. Before I was 34% and 97% respectively. Both excellent for that point in my transplant.

I met with Dr. Meyer, my Stanford doctor, last Thursday to discuss the remaining results. Again they didn’t see any abnormalities in the bone marrow but the chimerisms came back as “painting a puzzling picture.” My CD3 chimerism fell from 34% to 29% and my myeloid cell chimerism increased from 97% to 99%. Normally at this point of the transplant they like to see the CD3 number >50% and even though my myeloid number is so high, the low CD3 number suggests the engraftment isn’t as stable as they were hoping and there is a (small) possibility of graft rejection. As a result of this they are decreasing my immunosuppressant drugs (although I honestly have no idea how this is supposed to help) and I might have to have another infusion of Shaun’s cell (which Dr. Hickstein assures me we have plenty of in the bank). I’ll have my chimerisms retested in about 2 weeks so we should know more then.

Hearing this news from Dr. Meyer frustrated me. Mostly because it wasn’t something that I wanted to hear. I was used to hearing that I was doing better than most patients and this didn’t seem to jive with that fact and secondly because I had no idea what it meant. The idea of graft rejection just stuck in my mind making me pretty much tune out anything further at that moment that Dr. Meyer went on to say. He did try to explain it a little but it just didn’t make sense. None of it. I wasn’t asking the right questions to make it all come together. After meeting with him I did some research and e-mailed Drs. Hickstein and Parta and although it’s still not news I wanted to hear I feel much better about it. There are options to get this number up (e.g. taking me off the immunosuppressants and/or doing another infusion) and the chances of graft rejection in my situation are less than 5%. Again, we’ll know more in a couple weeks when we do the test again. On the plus side, I got some advice from Dr. Parta about this situation that I’m taking to heart. His advice was delivered in the following sentence…”I can assure you that there is no evidence that worrying about anything makes it better.” Thanks, Dr. Parta…I think this can be applied to a lot of things in life.

While I was with Dr. Meyer I took the opportunity to ask a couple things I had been curious about. First, if I could go back to work soon. And second, when I could drink alcohol again (not that it was overly important to me but I had been wondering when it would be allowed again). Dr. Meyer advised that I not go back to work until after my Day +180. Let me do the math for you. That’s the beginning of November. THE BEGINNING OF NOVEMBER. I was aiming for the middle of September and I understand this is the doctors advice but I’m not sure I want to take it. I also understand that me saying this out loud will likely encourage many of you to encourage me to not go back to work until November and now you probably think that it’s crazy that I WANT to go back to work and you would probably love for a doctor to tell you not to go back to work. But that’s the kind of person that I am I guess. Not that I’m getting bored or anything. I just uh, miss it. I’ll decide soon what I’ll be doing. Buuuuut…the second question and the answer I was okay with hearing was that he said it was okay if I have 1/2 glass of wine for “special occasions”, if I wanted, but that I shouldn’t tell him if I do. Huzzah!

On Friday, Alex and I went down to San Diego to visit some friends. I ended up ordering a glass of wine that evening. It was very anti-climatic and not nearly as satisfying as I was expecting. Unfortunately but maybe fortunately. I’m sure my liver appreciates the cleanse it has been going through. Especially after the chemo.

I am finally off the steroids and have been doing pretty well the past couple weeks. I’ve had a persistent nausea which hasn’t lead to any appetite changes nor vomiting but just lingers and I’ve also had a little itchy skin. Both symptoms are likely due to returning GVHD which Dr. Meyer suggests is actually a good thing. As long as these issues don’t get any worse I’ll continue to stay off the steroids. I’ve also been instructed to stop 2 additional medications so my daily dose now only includes a few pills. Definitely much better than where I started.

I still don’t feel the greatest about the news from Dr. Meyer but honestly there isn’t anything I can do right now that will change the outcome so I’m trying my hardest not to worry about it.

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Day +99

It’s Day +99.

99 days since transplant. And here I am. Slowly getting back to normal.

I think.

It’s been a little over 3 weeks since I last posted and a couple of you have started to notice. In the past 2 days, I’ve received 4 e-mails calling me out. It’s not that I haven’t thought about it. I have. I’ve even sat down multiple times to do it. But honestly. I just haven’t felt like writing. Actually more so, I haven’t felt like talking about myself. I think that’s been one of the great things about my blogging about all this. Everyone who keeps up on the blog doesn’t ask me how I’m doing. Because they already know. So when I do see people we can instantly move on from me and talk about other things. Which I appreciate. I’ve never liked to be the center of attention and this allows that to happen. Sort of. Except when I see people who haven’t been reading my blog and are surprised to hear about the melanoma or that I’m home. And I’m not calling anyone out here. Honestly. I know keeping up with me is a lot of work. And you already have a lot going on. And I often write novels. Like this one. I’m sorry. Maybe I should start to try blogging in 140 character or less. However, then I don’t think it would be considered blogging. I think that’s called Tweeting. Although I’ve never actually Tweeted anything in my entire life.

Anyways, I’ve been back from NIH for about 6 weeks now and since then I’ve been having doctors appointments that take about 20 hours each week. That is, between driving to the appointments, picking up prescriptions, getting labs done, and waiting for and seeing the doctors. One of my friends pointed out that it’s basically a part time job. I hadn’t thought about it that way, but it kind of is. Luckily, by the end of next week my 20 hours of doctors appointments each week should be drastically minimized.

Tomorrow I’ll be flying to D.C. to have my Day +100 tests completed at NIH. I’ll have labs, a breathing test, an EKG, a bone marrow biopsy and meet with Dr. Parta and Dr. Holland. Once I get home, Stanford will be transferring my care from their infusion center (which is where my appointments have been) to their clinic. I was essentially going 1-2 times per week but with this transfer I’ll be going only once every couple weeks. This is because as I become more stable and they start discontinuing some of my medications, it’s not as important to see me as often. You have no idea how exciting this is to me.

But on to the past few weeks.

Shortly after my last post I got the stitches in my back from the wide excursion biopsy removed. The area around the stitches was (and still is) very numb and I had the sensation that if I moved the wrong way I’d somehow rip my skin apart. I didn’t want to do that so I had been taking it pretty easy; not much heavy lifting, no weird movements. That kind of thing. This is what the stitches looked like right before the removal.
with_stitches
After the stitches were removed the nurse put paper stitches on. She claimed that they’d just disintegrate. It didn’t quite happen like that. They more so just got really dirty, their adhesive started to wear away and then they just fell off (and by fell off, I mean I peeled them off). I’m telling you. Everything I’m doing these days just sounds super sexy. Here is a photo of what the paper stitches looked like right after they were applied (e.g. before they got all dirty).
paper_stitches
And here we are today. scar
This is what my back looked like as of a few hours ago. The scar is still pretty red and I still have a lot of that darker skin discoloration that I’ve had but things are slowly starting to look better. I still feel like I could make a move that will tear my skin apart but my doctor said this isn’t a likely possibility and I can go back to doing yoga (which I had been avoiding considering all the stretching and stuff the body goes through) and other “normal” things like archery, rowing, and fencing (just kidding, I’ve never done those things before).

I have an appointment with the dermatologist in 2 months to do another head-to-toe assessment to make sure nothing has sprung up that I need to be concerned about. (I actually just typed, “they need to be concerned about” but then I was like, “No, it’s our responsibility so I should write ‘we’.”, then I debated again and was like, “No, it’s MY responsibility, no one else’s, I should write ‘I’.” — This by the way is why it takes me so long to write a blog post. I typically read over it at least 15 times before publishing and make little corrections like this.)

Anyways. Moving on.

About a week after my stitches were removed I noticed that when I lifted my right arm up there was this discomfort in my armpit (not related to the stitches). Every time I lifted my arm up above my head I could see what looked like a nerve resting under the skin. It just kind of stuck out and felt as if I extended my arm too far what ever it was would snap. It’s kind of hard to see but the arrow on the photo below points to the nerve like thing under my skin. More armpit shots! I know you were missing this…
aws
About a week after I noticed this, I saw one of my doctors who diagnosed me with Axillary Web Syndrome (Cording). This is a phenomenon often seen in patients after a sentinel lymph node biopsy. It is essentially tissue that gets damaged from the surgery and in most cases it goes away on its own after several weeks. Being the concerned individual that I am I decided to see a physical therapist to get a second opinion. She accessed the situation; said it wasn’t anything to be concerned about and gave me a couple exercises to do at home. She encouraged me to start using the arm as I normally would and not to “baby” it as I had been.

Around the same time I noticed the cording in my armpit something started irritating my left eye. It was red. And watery. And hurt when I moved it. Originally I thought I was developing graft versus host disease of the eye which terrified me. Untreated GVHD of the eye can lead to severe things like loss of vision but after extensive research (and talking with a nurse) I learned that GVHD of the eye usually appears in both eyes, not just one. After learning this, I thought I’d give it a couple days to resolve on its own. That didn’t happen so I made an appointment with my Stanford doctor to get their opinion. After seeing them they referred me to an ophthalmologist who literally did everything under the sun to figure out what was going on.

They took the pressure of my eye. Made me do a vision test. Shined very bright lights in it. Put a blue dye it. Then a yellow dye. (Then I had awesome green stains down my face.) They then took pictures. Then swabs. Then they dilated them. Then told me to up the dosage of my anti-viral medication. And started me on a steroid laden ointment that I put into my eye. (By the way, have you ever had to put an ointment in your eye? It’s weird. My instruction was to put 1 cm of ointment in 4 times per day. This just produced a goopy mess and to this day I’m pretty sure I’ve been administering it incorrectly.) Since it contains steroids I’ve had to taper myself from the medication and am now on it 1 time per day and will eventually go down to once every three days, then I can stop. What a hassle.

Here is one of the photos they took. Not. Sexy.eye
After only a day of being on the ointment my eye began to look much better (unfortunately I don’t have any professionally taken photos of my non-inflamed eye to show you but trust me, my eye now looks normal again). In the end, I was diagnosed with acute conjunctivitis (a viral infection) and only time would make it 100% better. After all this, I learned that eye infections (along with any other infections) are common among bone marrow transplant patients since our immune systems are compromised.

Remember how I was having terrible insomnia? I started on some medication for it which has helped substantially; however, I’ve been getting those headaches again that resolve only after taking a caffeine pill and some Tylenol (I’m not sure if they’re related to the insomnia medication or something else). Also, I’m still waking up at 4am ravenously hungry. I’m being tapered off the steroids so I don’t think I can use that excuse much longer but my nutritionist doesn’t seem to be concerned. Usually with bone marrow transplant patients they’re concerned about not having an appetite so I guess in the scheme of things this is better that the alternative. My weight remains about the same so as long as that continues I’ll just keep doing what I’m doing.

Through having the eye infection and cording, I have done some fun things over the past couple weeks so it’s not like I’m just sitting at home on my couch watching TV (although I do have days where I do that…remember the lack of motivation thing, yeah, that still happens some days). I went to BloomReach’s summer BBQ and saw almost everyone from work which was wonderful. I saw Back to the Future at the SF Symphony with Alex and also went beach camping with the family (I was cleared to do this by my doctor, by the way, I promise).

Here’s our group camping. Jasper, Jackie, Abby, Shaun, me, and Kathleen (a friend of Shaun and Jackie’s):
camping
Notice how I’m covered head-to-toe. I’ve been instructed to stay out of direct sunlight so I’ve been trying my hardest to abide by these rules. Especially while beach camping.

And lastly here’s Jasper, me, Shaun, and Jackie. I’m the bald one. I’m pretty sure Abby was sleeping during this. Or playing in the sand. That became her favorite activity. Jasper’s favorite activity was playing Uno. Mine was making sure everyone had sunscreen on. Shaun’s, I think, was attempting to fly a kite and Jackie’s was trying to get sand out of the tent. camping1
This was about 140 characters, right?

Some excellent news

The sentinel lymph node biopsy and wide excision results came in the other day — no sign of cancer in either place! That means the cancer did not spread to my lymph nodes nor was there any sign of melanoma around the original biopsy spot. This is exactly the outcome we wanted! I was beyond ecstatic when I found out. What this means going forward is that I will be closely monitored by a dermotologist and have appointments at least 4x per year for full body inspections of my moles. And lots of sunscreen.

How did I find out? No. Not from my Kaiser doctor like one would expect. But by my Stanford doctor. Seems odd right? I was expecting results about 2 days after the surgery so when that didn’t happen I started having all these thoughts about how the doctor didn’t want to tell me the results because it was bad news and she didn’t want to ruin my 4th of July weekend. Then another 3 days went by and I still hadn’t heard anything so obviously this meant really bad news and she didn’t want to tell me. But then I thought that as a doctor it is her responsibility to tell patients both good and bad news and she has to know how waiting for information like this is painful so I e-mailed her. That was on Wednesday. On Thursday I got a response from her saying that the report was still “in progress” and that she’d e-mail me as soon as it was complete. On Friday I had an appointment with Stanford. My doctor there was like, “That’s a long time for results, let me see if I have access to it.” And it turns out she did! So she gave me the results. I was slightly afraid she wasn’t reading it correctly and I’d gotten all excited for no reason but it turns out she does know how to read pathology reports which is great. Dr. Kavanagh finally e-mailed me yesterday confirming the good news. So bam. I’m all set.

At my appointment I had a runny nose so they did a nasopharyngeal (pronunciation here) culture in which they essentially stick a Q-tip into your nose until they get to your brain and move the swab around to get mucus and test it for viruses. They also did a chest x-ray because at this point of my recovery lung infections are very common. The nasopharyngeal culture came back as being positive for coronavirus which is basically a common cold. Now is the time for my new immune system to shine. It’s been holding up so far and I’ve just had a runny nose, sore throat and cough. No fever or achy body and my white blood cells are >12 which means the immune system has stepped up its game. Unfortunately there isn’t anything they can do for coronavirus except for symptom management. I should be back to normal in a few days.

Also, last week my body decided that I no longer need to sleep and have been having insomnia. I’ve discovered that 2am is a great time to do dishes and 4am is an acceptable time to eat breakfast. It’s a terrible way to live. Humans are not meant to be awake at that time of night.

This past week, although having to wait endlessly for results and not being able to sleep, has actually been pretty great. I went to a book signing for my favorite author, Chuck Palahniuk, and got a a photo with him, as well as a book signed.
ashley_chuck
I’ve also had coffee with several of my favorite people and attended a BBQ and saw some people I hadn’t seen in months. At the BBQ, not only did I have delicious tri-tip, but I felt at home with the amount of people that were bald like me. Pictured here are Josh, myself and Yingwei.
josh_ashley_yw
According to Josh we are sporting the seasons latest hairstyle trend. Are you going to join?

My motivation is slowly coming back. I’m still not as much into reading and crocheting as I’d hoped but over the past couple days I’ve aggressively been crafting and baking which is exciting because it is something that doesn’t involve watching mindless tv. I’m testing my skills with Crayon art…
elephant
and made some coasters and some other stuff as well.
coasters
I’ve also been into coloring. Apparently there’s an “adult coloring” trend happening right now and I’ve boarded that train. That does; however, involve mindless tv. Baby steps.

Maybe it’s the steroids

You may want to grab some pudding. Or maybe a cup of coffee.

I’ve been home for exactly two weeks. And I have a lot to tell you about.

I’ve had some highs and some lows and am slowly readjusting to being back. It’s a strange feeling. I’m home. But in a different capacity than I ever have been. I’m currently on short term disability so I’m not working. Walking up the stairs to my apartment fatigues me. And everything around me, is like from a me that is on pause. It’s hard to explain. I still look in the mirror and am surprised by the face that is looking back at me. Luckily I’m not chimpmunky any longer. I still find my long hairs on the floor or on my clothes and it’s a shock. I can’t imagine how it is for the people around me. I try and do things I’ve done in the past without any problem and see myself struggle. It difficult to come to terms with. Word of the wise. Hold off on the hot yoga for a couple more weeks. Trying this last week left me with the worst headache I think I’ve had in my entire life. I’m pretty sure I was in child’s position for about half the class because I couldn’t do what everyone else was doing and still. It left me feeling terrible. I might have pushed myself a little too hard. It was an emotional day.

My flight home two weeks ago was delayed about 4 hours because of thunder/lightening storms.

Everyone was annoyed…except maybe me.

As I boarded the plane, I was overwhelmed. Lots of people. Angry people. Annoyed people. People. People. People. I’ve been pretty secluded the past couple months (except for the slew of doctors and nurses I’ve interacted with) and to be around so many people in such a small space, I felt overwhelmed and…alone. It was strange to feel this with so many people around. But I did. One of the flight attendants pulled me aside and asked if there was anything he could do for me. I’m assuming it’s not every day he sees a bald woman, wearing a mask board his plane. I simply told him, “Just get me home.” Because out of everything in the world, that’s really all I wanted.

Finally on the plane!
on_plane
Here is the view from my seat…notice the dark ominous clouds off to the left…
storm_approaching
Yeah, those turned into rain clouds. And then the storm began. And at the same moment that the rain started, the airport shut down. No flights could leave for about an hour.
rain
So, after a total of 4 hours and having the storm pass we were finally able to take off…
in_the_air
A light on the horizon.

A 4 hour delay didn’t really phase me. Maybe I’ve just gotten really patient over the past couple months. Or maybe, like I told the flight attendant, all I wanted to do was get home and having to wait another couple hours to do so after all the time I had spent in Bethesda, it didn’t seem like that much.

Alex picked me up from the airport shortly after 11pm and took me home.

Before leaving for Bethesda back in April I had essentially gutted my apartment in anticipation for me to rent it out for several weeks while I was away. When I stepped in the door I had forgotten how I had packed away all my personal possessions; my house seemed barren. But I was home. Couch Island was still Couch Island. And Alex had stocked my fridge with morning essentials. Coffee. Milk. Eggs. Bacon. Amazing.

I was home.

Jackie and Jasper even snuck in and left me a surprise.
welcome_home
I was exhausted. I brushed my teeth. And went to bed. That night, I had the best nights sleep that I’ve had in months. I was in my own bed. With the cool (non-humid) air filling my room. No nurses waking me up. No house keeping stopping by. No phlebotomists drawing blood at 5am and no need for me to get ready to make a shuttle by a certain time.

I am home.

Breakfast the next morning was heavenly. Not to toot my own horn, but I think I’m one of the best baristas west of the Mississippi and after months and months of hospital food and restaurant food and not having my own kitchen, having a home cooked meal was something I was craving. And the coffee was delicious.

By late Wednesday morning I was sort of at a loss. I didn’t know what to do with myself. Do I unpack? Do I sleep? Do I just sit around? It was a strange sensation. I spent most of the day just sitting around and walking between rooms because really, nothing felt quite right to do.

On Thursday I went to Kaiser and met the doctor that would be following up on the melanoma stuff, Dr. Kavanagh. She went over everything in great detail and made me feel better about the entire situation.

The original dermatologist that told me about the melanoma sort of made me feel bad. Before telling me it was melanoma, he prodded me with questions about how often I’d been outside. How often I’d worn sunscreen. How often I’d get blistering sunburns. I felt like I was being accused of not taking care of myself. It didn’t feel good. But Dr. Kavanagh explained that me wearing sunscreen when I was 10 years-old wouldn’t have made a huge difference and there wasn’t really anything that I did to cause this. Every time something comes up. That is what first springs to mind. “Is there something I could have done to prevent this? Could I have eaten more spinach? Gotten more exercise?” And so often, there isn’t. It just happens.

Dr. Kavanagh explained what would need to be done and why there was such urgency.

The urgency. The type of melanoma I have it best fought off by the immune system. Given that I recently had a bone marrow transplant and am on immunosuppressant drugs, they weren’t sure how the melanoma would be affected and they didn’t want to take any chances. I appreciated this. And appreciated the fact that she took the time to explain this. This was the first time that had been done.

So. First, I’d have to have their dermatologist do a full body scan to look at the rest of my moles. I had this done at NIH but they wanted to do it again. We did this the next day and the dermatologist removed one more mole on my back to test because it was a little inflamed. It came back benign.

Secondly, I’d have to have a sentinel lymph node biopsy completed. This is a process in which they inject a dye/compound around the melanoma to see which lymph node that area of the body drains to. The lymph nodes are distributed throughout your body (groin, stomach, armpits) and act as a sort of filter to your immune system (filtering out cancer and other foreign particles). Once they determine which lymph node the middle of my back drains to, they’d biopsy that lymph node to see if the cancer had spread.

Lastly, they’d need to do a wide-local excision around the area in which they found the melanoma to see if any of the surrounding skin was affected. Dr. Kavanagh drew me the following picture to explain what they’d be doing.
wide_local
They’d take a 4 cm diameter circle around the original mole. Then attach two triangles from the left and right side and remove that skin then I’d end up with a large horizontal scar.

Last Tuesday I went to the lab to have the dye injected to see which lymph node they’d have to biopsy. The technician ensured me it would feel like a bee sting. The doctor said it would be like a mosquito bite. They were both miserably wrong and I let them know it. To begin, they inject the dye into 4 spots around the original mole using a small needle each time. The needle didn’t hurt so bad but once they pushed in the dye it felt like a scorpion sting that just kept stinging. This went on for about 5 minutes. Once the dye was injected 4 times, they had me lay on my stomach and put me in this machine which showed the flow of the dye which ended up going to my right armpit. I was now ready for surgery.
scintigraphie
I had the sentinel lymph node biopsy completed last Wednesday. I arrived at the procedure unit at 6am and was done by about noon. I was completely out for the procedure which was a good thing because when I woke up I was sore. I couldn’t lay on my back, only my left side because of where they made the incisions.

Here is what they did to the armpit. Just a little slit to remove a portion of the lymph node to test.
armpit_biopsy
I’ve been showing you my armpits a lot lately. I’m sorry. For this incision they used glue instead of stitches to hold the skin together. Ever since the biopsy my right bicep (above the incision) has been slightly numb and there are certain movements which shoot an excruciating pain through my arm. I’m told this is normal and should go away but if it doesn’t it likely indicates they hit a nerve and I may have some permanent damage. Time will tell.

And here’s the kicker. This is my back with the bandage. Notice the discoloration on the top of my back. Remember those rashes I’d been talking about…yeah, they’re on my back too.
bandage
And here is the bandage removed.
stitches
Yikes! Right? My reaction was, “Holy crap! I didn’t think it would be that big.” It kind of looks like a centipede is crawling across my back or that I got attacked by a shark. I’m just looking sexier and sexier by the day. Dr. Kavanagh said they stitched it from the inside as well as the outside which should make it heal nicely. This photo was taken 2 days after the surgery. I get the stitches removed in a few days.

So since Wednesday, I’ve been sitting anxiously by my phone waiting for the results which I haven’t received yet. Fingers crossed they come back today so I can stop this waiting.

My post transplant care has now been transferred to Stanford’s Bone Marrow Transplant clinic and I had my first appointment with my “new” doctor, Dr. Meyer, on Thursday. I say “new” because I actually met him back in January but that was before knowing I’d need the transplant. Everything went well and I think it will be a good transition. My labs look great and for the first time in weeks I don’t have anything to complain about (besides the pain from the surgery). Headaches are minimal. Appetite is good. Bowel movements are normal. Since I started the steroids a couple weeks ago I’ve had daily heartburn but in the grand scheme of things, I consider that minor and we began tapering me off the steroids last week so the heartburn should subside. Life is pretty darn good. I have my second appointment with Stanford in a couple hours.

For the 4th of July, Shaun, Jackie, Jasper, Abby and I went down to Dinuba to see the Vetter family. It was so wonderful to see everyone and just to be around so many loving people. Don’t get me wrong. It was exhausting. And hot. But spending the weekend with this little princess who can now say “TT”…
IMG_0897
And this goober who still thinks I “look weird” was great.
jasper_tt
I’m still sort of at a loss for what to do with myself but my days seem to be filled up by doctors appointments and eating and therefore cleaning. I eat a lot these days. It’s like my metabolism was kicked up a notch and I find myself continually munching on something. I’ll wake up at 4am ravenously hungry. Maybe it’s the steroids. I mean, I’m not ripped like Arnold yet, but maybe soon?

82 days in Bethesda

It’s been 82 days since I’ve been in Bethesda and in 1 more, I’ll be on my way home!

That’s right! Tomorrow. I’m going home! My plane leaves precisely at 4:49pm. Well probably not precisely since I’ll be flying and we all know flights often don’t leave at the exact time they’re supposed to. But I’ll be back home soon. (I’ll be back to NIH at the beginning of August to do my Day +100 check-up; I’ve come to terms that NIH will continue to be a part of my life for many many years to come.)

I know I have a lot to catch you up on from the past couple days (we’ve got a sigmoidoscopy to talk about, some GI issues, my improving rashes, my chipmunky face, and my blood counts to go over) but for right now I’m going to pack and sleep and get ready to be back in good ol’ California. And mentally prepare for some In-n-Out and non-humid heat. And family. And friends. And my bed. And my apartment. And…ahhhhh! HOME!

So you’re having a bone marrow transplant?

Here are 43 things I wish I had known.

This list is constructed based off my experience. It is not 100% complete nor will it be relevant to everyone going through a bone marrow transplant. Many of the things on this list are things that I learned that I wished someone would have told me. Some things pertain specifically to women; some only to patients at NIH, and some things are just good advice.

Keep in mind that I am not a medical professional so any of the things listed here should be taken as experiences and before doing some things (eg. walking around) you may want to check with your team if it is okay.

Throughout this post when I say “team” I am referring to your doctors and nurses.

  1. Have a positive attitude.
    Get ready…you are going to have good days. And bad days. And days that you just want to curl up in a ball and cry. You’re going to feel like crap. And you’re not going to look like you do in photos pre-transplant. You’re going to miss important life events. And it’s going to seem like everyone is having fun while you are in a hospital. BUT! It’s only temporary. And after all is said and done, you’re going to be better than when you started. Keep your eye on that and remember those things that you’re missing. You’ll be around next year to do them.
  2. Get outside as much as you can before your transplant (and wear sunscreen).
    If you’re an active person try to stay that way as you get closer and closer to your transplant. If you feel well, it’s helpful going into transplant as healthy and as much “you” as possible.
  3. Push your boundaries.
    Ask if you can go outside, exercise, do certain things — don’t just assume you can’t because you’re in a hospital. I thought I was restricted to my unit when I went out for walks, turns out I could walk all over the hospital, even outside.
  4. Get fresh air and sunshine.
    Two things in life we (my mother and I) believe are necessary (besides food, water, etc.). Plus hospitals get stuffy and are so sterile. If you go in the sunshine make sure you wear sunscreen.
  5. If you are feeling well, get up. Get out. Don’t just sit in bed.
    There will be days you feel terrible and won’t want to get out of bed. During my 30 days post-transplant at the hospital I made it out for a walk everyday but 2 of them. Because you are in the hospital doesn’t mean you are confined to a bed. Those days that I didn’t walk, I could feel myself getting stiff.
  6. Pack a button up shirt.
    After my port was put in, it was nearly impossible for me to lift my arm up (this lasted about 3 days); a button up shirt would have been helpful. Also, while my port was connected to the IV, the button up shirt would have been useful then too.
  7. Do you have a bra that snaps in the front? Bring it.
    See #6.
  8. Bring your own pillow and pillow case.
    NIH pillows leave a little something to be desired.
  9. Make your hospital room your own.
    A little color can go a long way. I decorated my room with handmade pom-poms, placemats, photos, and notes from my friends. You cannot have flowers/plants (they can contain mold) so be prepared for this. This is what my room looked like after I decorated it.room_pano
  10. Bring ear plugs.
    The hospital is a loud place. If you are putting in ear plugs let your nurse know so that if he/she needs to wake you they know simply saying your name likely won’t be enough.
  11. Bring an eye mask.
    Blackout curtains do not exist in the hospital. I’m such a light sleeper (normally the light from an alarm clock will wake me) and a sleeping mask made taking naps easier.
  12. Know what meds you are taking, at what dosage, and why.
    This isn’t just good advice for transplant but for anyone. There were several times I was handed the wrong dosage of a medication but because I knew what I should be given I was able to speak up. For each medication I received, I made sure I knew its name, side effects, use, and dosage. In fact, I got so well know for this that the nurses would bring me a print out of each new drug before administering it or they would save me the wrappers so I could look it up.
  13. Utilize the NIH Patient Portal.
    This not only helps you look incredibly involved in your transplant (which you should be) but allows you to ask your team questions when you see something in your labs that doesn’t look right. I went a step above and started tracking my white blood cell count and ANS as well as several other levels within a GoogleDoc so I could graph them to see how they were trending.
    wbc2
  14. Learn to give yourself shots, if you can.
    You may be getting a lot of them. I found it comforting to be able to give them to myself. I like them really slow and me being the one giving them I could control the speed 100%.
  15. Log your symptoms daily and be religious about it.
    The doctors will asking when something started. Don’t trust your memory to recall these details. You have a lot to remember. Write down your symptoms each day so when a week passes by and someone asks when something started you can say with confidence exactly when it first started. I even started taking a selfie each day so I could see how I was changing throughout treatment.
  16. If you think of questions for your team, write them down.
    See #15 — you have a lot to remember.
  17. Mention all symptoms to the doctors/nurses, even the embarrassing stuff.
    Don’t want to talk about that weird rash that showed up “down there”? Get over it. Your team has literally seen everything. If someone is in the room with you and you’re embarrassed to mention something in front of them, ask that person to leave the room so you can tell your team. It’s amazing how many meds they have to minimize the symptoms you are experiencing but they have to know about it first.
  18. Become comfortable and learn how to describe your poop in detail.
    The GI tract is severely affected by chemo and GVHD can present itself there. The doctors will want to know if your bowel movements have been “normal” and if they aren’t they’ll want to know all the details: color, consistency, texture. Words such as “pudding,” “oatmeal,” and “pellets” will be useful. You might even get e-mails from your doctor like this:
    stoolemail
  19. Bring comfortable/loose pants that don’t contain metal (ie. leave the leggings at home).
    I’m a leggings gal; however, after several days I longed for looser more comfortable sweat pants. The leggings are great and all but they’re just a little tight. If, for example, you want to show the doctors a rash on your knee, you may not want to have to pull your pants all the way down rather than just roll up your pant leg. Also, there may be days where you retain water more than normal. What were comfortable fitting leggings one day quickly become really tight fitting and can restrict blood flow.
    Why no metal? It’s amazing how many test can be done in your own clothes if you are wearing the right thing. A CT scan, for example, can be done in your clothes if they don’t contain metal. Same goes for an MRI (this might only be at NIH).
  20. Leave the thongs (the underwear type) at home.
    Sure they’re great so you don’t have panty lines but a hospital really is no place for them. Opt for something a little more comfortable; something that you are okay with if you have to drop your drawers in front of your team.
  21. Bring thongs (the shoe type).
    For when you want to throw on a pair of shoes really quickly.
  22. Bring slippers
    See #21 but for when you are wearing socks.
  23. Bring a nightie.
    The groin is one of the first places to get a rash. You may want to air this out every once in a while; I’d suggest a nightie or long shirt so you can go “free” comfortably. Nurses come in at all hours of the night, you may have to get up in front of them, a shirt covering you up might make the airing out process easier and less revealing.
  24. If you have long hair, cut it short before starting chemo.
    It’s quite a shock when it starts falling out. I had long hair and got mine cut fairly short before starting chemo to get used to the idea of not having hair. Once my hair did start falling out I waited a couple days to have it shaved; I wish I would have done it earlier because once it started falling out I was afraid to shower for fear of clogging the hospital drains with all my falling out hair, then my hair became greasy and I just felt gross.
  25. Bring a comfortable beanie.
    You lose a lot of heat through your head (even more so when it doesn’t have hair) and the hospital is kept a pretty cool temperature.
  26. Bring clothing you are okay with ruining.
    At one point I was using several different creams on my skin that my shirts, my underwear and even some pants got stained with the medications. I was not very happy when my favorite pair of underwear had to be thrown away because of this.
  27. Bring sunglasses.
    Your eyes will thank you as you transition from being inside with fluorescent lights to being outdoors.
  28. Bring things to do but also be okay if you don’t feel like doing them.
    I went all gung-ho in this department. I brought all sorts of books and crafts to do. In the end, I often only wanted to watch tv and play mindless games on my iPad. I felt bad at first for doing these things rather than reading a book but then again I felt pretty terrible and not like myself at all so I considered this okay.
  29. Shower daily.
    I don’t know about you but to me showers are pretty much the greatest thing in the universe and I always feel better after taking one. Plus, it’s better to be clean especially when you are neutropenic.
  30. When you buzz for your nurse, speak loud and clear, and let them know exactly what you need.
    If you need, for example, Tylenol, your nurse can bring it directly to you rather than coming to you, then having to go to back to the medicine room.
  31. Eat when you are hungry, don’t just wait for breakfast, lunch, and dinner.
    For me, my appetite decreased substantially within the first week of my transplant; however, when hunger hit I was immediately hungry. Room service can take up to 45 minutes to bring you food and by that point you might already be over it and no longer hungry. If you follow a special diet (gluten free, vegan) ask if they have special menus for you to follow.
  32. Keep snacks in your room.
    See #31.
  33. If you are an avid water drinker, this may change.
    Typically throughout the day I drink LOTS of water; however, a couple weeks after transplant/chemo water just tasted awful. I had to keep my intake up (otherwise they’d put me back on 24/7 IV fluids) so I used water flavoring to make it bearable to drink more.
  34. Establish boundaries with your visitors/caregivers.
    Visiting hours are between 9am and 9pm but no one enforces these rules. If you want to make sure you are asleep by 9:30pm tell your visitors this so they can leave at the appropriate time.
    If you need a nap, tell them. They are there because they care for you and will respect your requests. They just need to know them.
    If you are not comfortable talking to doctors/nurses in front of them, simply let them know that you’d like them to step out when the team comes in.
  35. Stick to a routine.
    In the hospital there is so much that is out of your control. Nurses need to see you. Meds need to be given. Doctors come in. More doctors come in. The list seems endless. If you want to shower daily make sure you do so. For me, I felt like I’d wait my entire morning for the different teams to stop by only to realize I hadn’t gotten out of bed and it was already 1pm.
  36. Now is not the time to try new lotions/products.
    I had several skin issues throughout my treatment. Had I thrown in a new lotion or product it would be hard to tell if the reaction I was having was from the new thing or something from treatment.
  37. Are you a meat eater that likes their red meat “rare”? Eat as much as you can before transplant. Same goes for eating sushi. And drinking alcohol.
    These are some of the things that you’re not supposed to have post-transplant for several months. Don’t make yourself sick but have these things to a satisfying level while you can. Now, I wouldn’t suggest going on a bender before getting to the hospital though either. Your liver takes a beating and you’ll want it in tip-top shape.
  38. Are you a caffeine addict? Try to wean yourself off before transplant.
    There will be days where you will not be able to drink coffee (maybe due to a sore throat/mucositis) to get that buzz that you need.
  39. Introduce yourself to the people entering your room, if you want to be called something specific, tell them so.
    They should already know who you are but they may start calling you by one name when you’d rather be called something else. Eg. “Ms. Vetter” vs. “Ashley.”
  40. Have guests in your room and your nurse/team comes in? Introduce them to one another.
    It’s just a common courtesy.
  41. Know your doctors and nurses names and make sure you can pronounce them.
    See #40. Also, people are going to be asking who your doctors are and you don’t want to be that one patient that didn’t know who was taking care of them. If you have to, write down their names phonetically so you can remember.
  42. Ask your nurse for the plan for the day.
    This way you know if you have to put on pants before 1pm to go to an appointment. Rushing to get ready in 2 minutes because the escort is waiting is not very fun.
  43. Friends and family will want to help.
    Give them specific things they can do. I did learn; however, that when you’re in the hospital there really isn’t much they can do.
    I asked my friends to send me postcards. The response was amazing and it was fun getting these each week. I displayed mine on a “Where have you been?” wall.
    whybwall