Our little miracle is here!

Hi! Haven’t posted here in a while but assuming everyone else is on the same page of knowing that no news is good news. Yes, there are still many lingering issues with my health that I will discuss in another post-nothing super serious, just lingering GVHD issues and problems that come with being on immunosuppresents for over 2 years. BUT that’s it for the cancer talk here.

Let’s talk about our adorable Robert Ray! He arrived on July 27th weighing 9 lbs 4 oz, 20-3/4″ long. We met our surrogate, Dawn, through one of my mom’s dear friends. We are in my hometown for a few weeks, hanging out at Grandma’s. I could go on and on about how wonderful Dawn and has been and all she’s done for us, but I could never really fully express our gratitude in any online forum.

I don’t use the word “amazing” lightly, but it’s pretty amazing that this little guy was frozen in a straw for 3-1/2 years, was shipped from Seattle to Texas and thawed out in a petri dish and is now a perfect little baby with 10 fingers and 10 toes who could roll over from tummy to back at 1 week old!

Since not everyone in the family is on board with Facebook, I’m posting pictures here until we figure something else out. Robert Ray thanks you all for all of your support and looks forward to meeting everyone!

 

Happy 2nd Birthday, Klaus!

Well, it’s not officially until the 22nd, but I had my 2 year post transplant long term follow up this week.

Most important, the cancer–NO recurrent disease. So, everything else here is just gravy. A clear CT is what I hoped for. That, and passing the structures portion of the architectural licensing exams, which I took the day before my CT….why not just get all the stress over at once? The day when I would receive a “pass” letter and a clear CT seemed too good to be true. Both of those days came.

GVHD/sclerosis: My arms have been all messed up for about 15 months. My wrist flexibility is limited, the skin on my forearms is super tight, the skin on the bottom of my arms is all weird and wrinkled,  and I have tightness in my pecks (ie I can’t make a T on the ground with my arms out flat). The steroids and methotrexate I’ve been on for over a year haven’t seemed to help this much. I’ve been a in clinical trial getting Rituxan once a week for a month every few months. Had it in January. They want to continue but I have some low counts in my white blood cells that need to come up before we can continue. Rituxan has helped people with this condition.

If this doesn’t work, they have a drug which was the other choice in the clinical trial. The last resort is some sort of photo-peresis treatment where they take out your blood, treat it with UV or light and then send it back in. It helps 50% of people who haven’t had success with other things. BUT, they recommend getting a catheter for this, which brings up such a sense of dread for me. The condition of the sclerosis DOES NOT negatively impact my regular, daily life, but having a catheter definitely will. There is just the fear that it will progress and I’ll have permanent loss of mobility or that the inside of my organs could end up looking like the skin on my arms. I’ve heard of people who get dialysis having to use the veins on their feet when the others go bad, I’ll do this before I’ll get a catheter again (BTW my veins are fine, and I got 6 hour chemo about 10 times when I was first diagnosed with no port or catheter).

So, let’s hope the Rituxan or the other trial drug can give the doctors the results they want. I have labs again next Wednesday to see if my Neutrophil count is back up. I also have a PT session to make sure I’m doing all the right stretches and things.

In terms of overall physical well being, I’ve joined the cult of Crossfit and I love it! I have to modify everything and I am totally remedial, but it’s been so good for me. It’s like PE for grownups, basics like pushups, situps, lifting, kettlebells … lots of heart-pumping strength training. I need the discipline of a class and someone making me do something, and they push me more than I could ever push myself. I am just so far behind where I was in my previous life (BC) that I have to check my pride at the door, and balance keeping a trainer that’s unfamiliar with my huge rap sheet abreast of my limitations with my wrists and lungs (still have some damage from the GVHD last year) and the reason I’m so weak–not because I was just hanging out on the couch–but not wanting to be cancer girl all the time. But, I am getting stronger and even after a month and a half can totally feel the difference in my body.

Last year around this time I was 20 pounds lighter and could not even lift up my carry on suitcase into the overhead bin. This will definitely not be the case the next time I fly! (BTW I’ll be in TX May 15-22nd. I’ll put something on Facebook, I’d like to do another afternoon get together around the pool, probably on the 16th).

Eyes: they are under control. A little irritated with allergies, but steady. I hope that someday I will not have to do eyedrops 8x a day, but can’t really complain considering how bad it was at one point.

Lungs: they didn’t schedule a Pulmonary Function Test as part of my follow up, so I’ll have it next week. The CT showed residual nodules from the pleural effusions, clot, fluid, GVHD, etc from last year. They only really bother me when I walk up a big, steep hill or try to run. Running used to come so easy to me, even when I hadn’t run for awhile I could pick back up with 3 miles, so it’s beyond frustrating to not even be able to run more than a few blocks. It’s just so hard with my lungs. I am slowly building but it’s not fun. One of our friends won the lottery for some coveted backpacking passes this summer, so my goal is to make it up to the Enchantments without passing out. This is a good, clear, and reachable goal.

Babies: So, this is the time when I start to wade into the intimidating world of surrogacy. I am terrified of how difficult and stressful the process will be, that something will go wrong with my health in the mean time, of getting my hopes up and being let down. I just feel so behind already, but of course we want me to be healthy, even though I’ll never be in the clear…I’ll always be worried about my next scan. I’m going to start slowly by doing some research, maybe meet with a lawyer. My old neighbor worked in a fertility/egg donation clinic and is helping me out with some resources. I just feel very alone in the whole endeavor, and frustrated that we will have to go through so much expense and effort for what is literally the most natural thing in the world for most people. [It gets old to keep adding this caveat, but I’m of course thankful that the option even exists and already beyond eternally grateful to our unknown future surrogate. I hope at this point everyone knows that I’m grateful for modern medicine and everyone who has participated in getting me to this point and who will get us to the point of having a family. I would NEVER want to sound ungrateful or entitled to anything]

This is of course all pretty personal stuff, and I share it here mostly for ease of disseminating the information. Many people may ask, can you carry yourself? Technically, maybe, but not now. In terms of natural conception, that ship has sailed. They know of no one over the age of 28 who had a tandem stem cell transplant who was able to conceive naturally. As for me carrying, I’m still on like 10 medications, my GVHD is no where near under control, and oh yeah, they don’t love for you to carry pregnancies when you’ve had a blood clot. And my body has already been through so much, who knows how it would react. It’s just not an option right now or maybe ever.

I’m sure there will be people who disagree with our decision to start a family. I totally understand if you do. But, we have one life. If I can help it, I’m not going to miss out on one of the most fundamental experiences of life. The technology is there for this to happen. I’m already only alive because of modern medicine, so any ideological disagreements you have with me at this point would mean that you don’t think I should be alive, and so….not much I can help you with there.

This point may be a bit morbid, but when in my situation you have to face your own mortality. I am married to a great man from a great family, and if my life ended early, I have no doubt our children would be well taken of, and that he will be able to find a wonderful new wife (who I would already be jealous of). If I was in a shaky marriage or had any doubts about my marriage, I would not do it. There are no guarantees for anyone, and most people reading this feel exactly how I did on February 2, 2010, or how my dad did on January 25, 2012: invincible. But no one knows what may happen the next time they get in car, stay home from work feeling like they have the flu or go to the doctor thinking they have a sinus infection.

OK, that was a total downer, so I want to end this on a happy note. NO recurrent lymphoma–yeah!! A few of these quotes have come up this week with everything going on, and this is the way I have to live my life:

“Worry does not empty tomorrow of its sorrow, it empties today of its strength”

“Don’t let the fear of tomorrow rob your joy today“

 

Dark Days

So, this post is a bit of a downer. It’s been a crazy few weeks. Things seem to be getting better now, but it’s been rough.

Last time I talked about my dry eyes, which have been totally debilitating. They seemed to take a turn for the worse when the weather turned in October. This happens to a lot of people at this time of year, but when the cause of your dry eyes is unrelenting foreign cells in your body it’s hard to fight. I have to constantly remind myself that these cells are also fighting cancer.

I had a long term follow up appointment the day before Thanksgiving. The recommended a bandage contact lens clinical trial. We had a wonderful time in Sonoma (wine country) for Thanksgiving with our parents and the Barrows, lots of sun and good food. But the dry air was terrible for my eyes and I was pretty miserable. The next week I got my new special contact lenses which I reported on, which were great for a few days. Then I got hit with what I thought was a bad cold. I have not had a cold since the whole cancer thing started, probably due to how diligent I am about hand washing, etc. The inflammation and fevers were just too much for my eyes and there were a few days where I could not drive or see the computer.

It is scary to admit, but I had some dark thoughts during this time (this is about 2 weeks ago). I felt like I was in a hole I would never get out of. The weather in Seattle this time of year doesn’t help, with the dreariness and barely 8 hours of daylight.  With all of the terrible side affects of treatment I have dealt with, this has been the most frustrating, debilitating, humiliating.

So I basically slept for a week.  I thought the fevers were over but then I had 101.5 that Saturday night. I took an Ibuprofen and went to sleep, but woke up around 5 with terrible nausea. I went to the bathroom and apparently made some funny noises and Sterling found me passing out. It took a few minutes for me to come to and it was pretty scary for both of us. We went to the UW emergency room, the furthest hospital from us since we live on “Pill Hill” but where I am in the system and they do all of the transplant care. I spent the day in urgent care and felt better when they gave me a bunch of fluids. They decided to admit me since they didn’t know what was wrong. I got an IGG infusion (which they did before I went to Turkey, to normalize your immune system), more fluids, and lots of q-tips up my nose. They were about to let me go on Monday when news came that a nasal swab revealed RSV, a respiratory virus that only us immune compromised (and newborn) folks get. If my counts were any lower I would have had to stay in the hospital for 10 days getting a daily gas chamber treatment. This would not have been good for my sanity or holiday plans. Luckily, it’s not totally down in my lungs and my blood counts were OK to be sent home.

I haven’t had any fevers this week but it’s a long virus, lasting 2-3 weeks. I’m on 2.5 weeks now. My head is still a fog but I haven’t have any fevers and whatever muscles I pulled coughing are healed. The worst part has been the havoc it’s wreaked on my eyes. The inflammation from being sick is out of control and the surface of my eyes and eyelids are like sandpaper. I went back to UW less than a day after I got out of the hospital (a week ago) for another ultrasound of my eye which is part of the clinical trial. This is a miserable experience as having your eyelids held open by q-tips for 30 minutes in a bright lab is about the worse feeling when your eyes are dry. I could barely drive home and was praying out loud the whole time it was so terrible. I tried to fix one of my contacts when I got home and basically ended up tearing up my cornea. It was the worst pain I have ever felt, no relief by closing your eyes or applying pressure. As I was screaming in pain Sterling found the number for the doc in charge of the study and luckily she was at her Harborview clinic right up the street. I got some numbing drops and pain pills and then spent the next 24 hours laying in the dark.

It seems the worst of the eye stuff was connected to being sick. It is slowly improving. Yesterday I actually had a full day of work and went out to dinner with my book club last night and drove home. My eyes are usually done by about 8-9pm. I am wearing my awesome sunglasses that go over my glasses to use the computer. I was getting so scared and discouraged that it seemed like with every new treatment my eyes get worse, but it was just bad timing with the contact lens trial starting right when I was getting sick. But I am hopefully learning how to manage it. It’s just frustrating because there’s no timetable. There’s no cure for dry eyes and there’s no telling how long my GVHD will be so active. I go for a new clinical trial on January 4th. I will taper off Predisone and Mexathrexate and get one of 2 medicines (it’s a randomized trial). This is mostly to treat my joints and skin issues. They say that oral meds can’t really help the dry eyes. They were not as bad when I was on a high dose of steroids, this may be a coincidence, I have to trust the docs on this one. Once they have determined that steroids don’t work for your GVHD you are basically out of what science and the FDA knows and everything is experimental.

Oh, also,  a good thing about an emergency hospital visit is a spur of the moment CT. You all know how anxiety inducing a CT is for me, from the time it’s scheduled till I get the results and I a a nervous wreck. But I got a CT with contrast to look at my lungs, they are OK and there are no massive masses of lymphoma in my chest. I would imagine my next official CT and PET scan will be in February and I’ll be a wreck then, but it’s nice to know there’s nothing amiss in my chest right now.

OK, that was long, but there are all the gory details. I’m hoping to feel good enough to enjoy Christmas is Fayetteville and hope that the weather there doesn’t derail any progress I’ve made.

Thanks to everyone for your patience with me and how selfish I have had to be. I have to point out that Sterling has been sooooo wonderful, it’s been a trying few weeks and he gets a huge gold star for taking such good care of me and dealing with all of this crap.

Happy Holidays everyone, thanks so much for being here and letting me put everything out there. It really helps me to be able to write about it.

 

Sight for sore eyes

I woke up this morning with a sense of dread…not sure if it’s because my life seems to fall apart in January and February each year, or maybe it was because I was up 3 hours before the sun. I’ll blame it on the time of year and the weather and assume that many Seattlelites are having some issues too.

Or it could have been because I was nervous about my appointment today. I am part of a trial at UW for using special contact lenses to treat GVHD in eyes. In case you’ve missed it, my eyes started bugging me in May, and I went to the eye doc in July when I was having dull pain. I’ve been doing prescribed eye drops 6x a day. The pain was quickly relieved but I started to feel the dryness, and it’s been a constant rock in my shoe since the weather has turned colder.

I feel bad complaining about this, for many reasons, including that this isn’t a threat to my actual health, and I’m alive. I feel like I’m being insensitive to anyone who has lost anyone to cancer complaining about my cure. But oh my gosh, it’s been the most consistently hard to deal with side effect of GVHD, the latest being that with how sensitive my eyes are to light it’s difficult to drive with headlights or sun. I’m lucky enough to live somewhere were I can take the bus, although not being able to drive would be extremely inconvenient and time consuming given the current locations of my regular work obligations and appointments.

Not to mention that all of the irritation and drops make it difficult to wear makeup, which for a fair girl like me is not the most flattering look. Priorities, you know.

So at the end of a lot of ultrasounds of my retina, I put in the special contacts and so far, so good. I would even say there was instant relief. I will wear these 24/7, be diligent about not infecting them, and go back in 2 weeks. I know so many people suffering or mourning right now, but if anyone has any extra positive thoughts or prayers to send my way, I would appreciate it. Given the fact that my current GVHD is affecting my wrists and my eyes, the two most important things for architecting, any permanent damage would be detrimental to my long term well-being.

Thanks so much for sticking with me, those of you that are still reading!

 

Confession

Many people have complimented me on how positive I am or noted the fact  that I am not angry. Well, here’s a news flash: I’m angry. I’m bitter. I always thought I was “above” bitterness somehow, which was foolish, because it has taken hold and created this black place inside me when I wasn’t looking.

I am not so much bitter about cancer, but the fact that it has left me infertile. That I am behind everyone (more so than I was before), that I most likely will not be able to carry a child, that there’s a chance something will go terribly wrong with my health at any time, and that when we do decide to pull the trigger it will be long, bureaucratic, expensive process,  I worry that an earthquake or a bomb will hit the building where the Hambryos live and something will happen to them, I already worry about being judged for not breastfeeding or still not truly being part of the “mommy club” because I didn’t actually carry the child.

I do not want to turn into a bitter person. I am sorry to anyone who has directly or indirectly incurred my wrath when I have projected this bitterness. I love your kids, I want to hear about them, your joys, worries, complaints, milestones. Please don’t feel like you have to hold back your news of being pregnant or how much fun your kids are.

I am not asking you to pity me, or be politically correct, or tiptoe around me. I would hate it if anyone felt like that with me.

But I do ask a few things. I’m not assuming to speak for all infertile women, but I’m willing it’s a safe bet not to say these things around them either. Please do not tell me how it’s great that we get to travel or do fun things and you wish you could but you have kids. I will trade, you can have cancer and not have the choice to have children and go to Europe. And please don’t tell me “just wait until you have one…” when I say that I want multiple kids. I understand it’s going to hard. Just let a childless woman have her delusions. No reason to beat a dog that’s already down.

 

10/21

Sorry it’s been so long since I’ve last updated. Life has been a whirlwind lately and if I am not working with your or we haven’t attended a wedding together, chances are I’ve been pathetically out of touch with you. I’ve been so inwardly focused for the past few months, catching up on work and dealing with so many lingering insurance and health issues.

But that is really no excuse. I have to remind myself that each blog post doesn’t need to be an hour long expose. I can just write a quick update, especially for such a moment as the 18 month post transplant mark, which happened to fall on 10/21. (My lucky numbers for many and no reasons, which I have been made of for plenty over the years).

Just still dealing with chronic graft vs host disease. This is normal for 2-3 years post transplant. The most ongoing and annoying is dry eye, which started on our trip in May and has brought my vanity to its knees. I did order new glasses though this week which will be nice since I have to wear them all of the time now. The next issue is the scleraderma / faciitis in my wrists and arms. I have to stretch them out every day. I’ve been doing heated Vinyasa yoga for 2 months which has been great and I’m even starting to get some muscle back.

Long term follow up is trying to decide the next move. Steroids were great for my lung and GI issues but did nothing for my wrists and eyes. There is really no other best treatment for GVHD, any other meds are a crap shoot. I’m on what’s known as a chronic Prednisone taper until they figure it out.

Here’s a recent pic for those who are not on Facebook, to check in on the status of my ponytail, which I’m afraid is not doing that well! I don’t think my hair is growing much these days, which could be a side affect of the immunosuppresents. Add that to my stupid eyes (I’ve been sneaking my contacts in for weddings) and steroid face and I’m not super happy with pictures lately.

I’ll write some more detail later. Thanks for checking the blog!

 

Ponytail!!

A (very) small victory for an otherwise crappy and stressful work day.

 

Some reflection….

Warning: I’m ruminating on some pretty big things today. I had my routine check-up with Dr. M and we were chatting and we got onto the subject of how he fought for my old insurance to pay for the transplant. The disease was really bad, I’m extremely lucky to be here, etc, etc. I know this now, but it’s still a crazy thing to be reminded of. And the first time I heard it, my first appointment with him as my regular oncologist (Sterling was there too) was about an hour before my dad died, so I didn’t really have time to let the gravity of what he was saying kick in. Sterling and I had this hour of crazy euphoria/terror/clarity/whatever that turned out to be really the most significant afternoon in my life.

After my appointment today, I had a visit with the wonderful Kris Barrows and then came home to get back to work. In between drafting and listening to Sterling conduct some condo board business, I was thinking about the constant philosophical tug of war we are in when we have our basic needs met. We are always told to live life to the fullest, follow our passion, don’t sweat the small stuff. But just because I have been given a second chance doesn’t mean I can just drop out of life’s obligations. Following my passion (cities, infill development, livable neighborhoods, urban design) means doing a lot of grunt work and seemingly insignificant tasks. I am lucky enough to be so passionate about what I do, and it’s all about the journey. Working on my own development has been really stressful, but I think having a goal, a project, working towards something this past year is priceless in whatever mind-body connection exists.

I’ve said before, I think life is about reaping and sowing, and living is in the sowing. If I could not work, I would be very unhappy, because I am lucky enough to love what I do. But I have to learn how to manage my stress and keep the big picture in mind. My out of control life has fed my obsessive tendencies to the point where I fret about a few things-I’m obsessed with my budget, that I’ll forget something or leave my phone somewhere–I usually run a series of errands at a time and this will require a list that I rewrite 3 times. I think that’s a perfectly normal reaction to large life events that are out of your control (being on steroids doesn’t help), I just need to learn to manage it. I have to try little mantras and ways to handle this new type of stress.

Which leads me to my main point (kudos to you who have stuck with me this far): I was thinking this evening, do I have any regrets? If it had come to that point where they said there’s nothing else they can do for me and sent me home, would I look back on my life and wish I had done anything differently. I know this is not a revolutionary thought but it’s usually a little more theoretical when you’re in your 30’s. It comes down to this: I have a freaking sweet life. Even with what I’ve gone through, I’d still want to be me. I’d rather have had my dad for only 33 years than not have exactly him. You know the rest, I’ve bragged about lucky I am many times here.

I guess my only regret would be I wish I didn’t worry so much. I used to struggle a lot with anxiety, but it was more fear of the unknown or what horrible things could happen. (Mrs. G if you’re reading this is a shout out to you). In our high school girls bible study we did a lesson on healthy versus unhealthy fear that has always stuck with me. Healthy fear is say, when a bear is attacking you. It is a natural survival instinct that kicks in as an essential biological response. Unhealthy fear is fear of the unknown-worrying about being mauled by a bear when the chances of that are very, very small. (Funny story: before Ashli and I did our week long backpacking trip on the AT I discussed my fear of bears with many friends in Chicago and was always reassured that that chances of seeing a bear are very low. So, of course we are on the trail for no less than 2 hours when a bear wanders into our camp site 10 feet from us. For some reason we named him Angel-pronounced with a Spanish accent-and calmly talked to him until he wandered away and we properly buried the previous camper’s dinner they had just dumped on the ground)

I’m better on the unknown stuff now. As Bode would say, the other shoe has dropped. My life is not perfect and there are just things that are out of our control. It was perfect for a long time, and I spent so much time worrying about when the inevitable troubles would come. I have won the lottery of life in most ways and lost in a few ways. Now, my problem with worrying is sweating the small stuff.

We can’t avoid the small stuff. We can get rid of some of the non-essential small stuff that is causing us worry. We can admit we are not perfect. I do not sew, I will never be a chef, I will go days without wearing makeup or doing something with my hair, I still wear the same old clothes with the initials AK written in them from when I worked at summer camp 13 years ago, it will always take me an hour to go to the grocery store because I can’t make a decision, I know every celebrity baby name and relationship history, I am addicted to my Iphone, I will waste many more hours of my life watching the early seasons of Sex and the City, Gossip Girl and Grey’s Anatomy over and over and never understand Pulp Fiction, I will never give up white flour or coffee, I am too lazy to compost, I kill every plant that crosses my path, I get big-box euphoria buying toilet paper at Target, I will always sing in the car no matter who is next to me at a stoplight, I love Taylor Swift and Kelly Clarkson, I will never be able to spell or be fluent in another language, I’ll never know the difference between a Sauvignon Blanc and a Malbec, I will probably never get around to reading Shogun or Lonesome Dove or the stacks of fancy architecture magazines that I get for free, I talk wayyyyy too much and too loud. But that is who I am, and I’m not going to try to fit into some ideal. That is a way that I am cutting out the “small stuff”-accepting who I am and moving on.

OK, I think that’s enough for one post. I’ll close with a quote from an article I posted on Facebook a while ago,
“20 things life is too short to tolerate” and have on my desktop:

“Life is change.  Every day is different.  Every day is a new beginning and a new ending.  Embrace it and make the best of it.”

 

Happy Birthday, Klaus!

Just wanted to give a quick update. The year anniversary of allowing the cells of my very generous stem cell donor into my body was April 22.

Last week I had a full slate of standard 1-year post transplant tests and appointments. I will write a detailed update on this in the next few days, but just wanted to let everyone know that everything is good and that the docs are very pleased with how I’m doing.

I see Dr. M on Wednesday for a routine visit and he’ll set up an appointment for an IUIG (?) infusion, some immune system number that is super low that they want to boost for our upcoming trip. Otherwise, moving full steam ahead with my Predisone taper, and actually woke up with my alarm at 6:45am this morning and not before! That is quite a feat. Of course I have just started staying up later so I’m really just pushing it all back, but I am definitely not roid raging like I was before.

OK, more in a few days.

 

And your little dog too…ha ha ha ha

That is the universe laughing it me. Yes, for those who haven’t heard, Silas had some of his own malignant tumors. We found out about 2 weeks ago and he had surgery on Friday. It went well and he is doing too well, never even limping or anything on the leg where they took out a chunk of his heel and rear end, so it’s hard to keep him calm so he can heal. Yes, he’s a dog, he’s almost 8, and purebred boxers are susceptible to tumors, but the timing is just…ughhh!

Anyway, I am doing well. I had to look back over my last post to see what was going on since it seems like so long ago. Between vet visits, dealing with Sterling changing jobs therefore new insurance, my own doc appts and med bills, deadline after deadline for our project and other minor personal crises, in addition to everything that has happened this year, I am maxed out on personal stress. I pretty much lost it on Friday between dropping Silas off for surgery & getting ready to take drawings to the city after I ran out of large plan staples and managed to break my 2 next best staplers. Good thing I am a nerd and have 4 staplers.

Don’t get me wrong…I am happy and thankful that I am healthy and have hair and the best friends, family and husband ever. But there’s just so much one girl can take, right? I just want a few days (weeks and months would be good, but I’ll take days) where there is no frantic deadline or personal business to hash through, where I can just work, watch TV, and go to bed. I’m very pumped for our Klaus Beats Marla Party on Saturday night, having Paul  & my brother in town for Easter, and maybe sneaking in a glass of wine (shhh…just one tiny glass…the antibiotics I’m on can suck it up for one night).

Physically, I’m great. I had a CT last Thursday to check on my lungs and saw Dr. M (new oncologist) yesterday for a check-up. The CT was to check on the GVHD in my lungs so I can start tapering off of Predisone. It was all good, everything is back to normal, which I suspected since I’ve been trekking all around town with no problems. But seeing as a simple chest CT is how I was diagnosed with Lymphoma it’s always nerve wracking. My appointment went so well that we spent most of it discussing my doc’s cabinet project he’s working on, which he likes to talk about with me. I am SO thankful for this doctor, he is awesome.

The only thing he was not happy with was my weight…which I was under orders to increase but it somehow still decreased, not for lack of trying. Now, this should seem like a dream situation for me, someone to who lives to eat, to be under doctor’s orders to put on weight.  It sort of is, except that I want to put on the right kind of weight so I’m trying to eat a lot of protein-extra eggs and putting Greek yogurt on everything, and my stomach is still not 100%. We drove to Bend weekend before last to see Cam, Kira & Saba (the dog’s favorite girlfriend) and on the way I went a little overboard with Sonic (which we don’t have in the Seattle area but are cropping up in other parts of WA & OR) and Red Vines, spent the entire night throwing up and the entire next day feeling crappy from it, reminding me what it was like to feel crappy all of the time. So no going overboard, no fast food, and I still have to take it easy on roughage like salads. And, this would be much more fun if I was home and could eat lots of BBQ and Tex Mex. However, I am very happy that this is all falling on my favorite food holiday, and have enjoyed more Reese’s Peanut Butter eggs than I care to mention.

I have my Long Term Follow Up week of appointments next week where they check on pretty much every part of my body one year out from allo transplant. Eyes, teeth, bone scan, bone marrow, etc. Since everything is OK with my lungs, I was able to begin the Predisone taper as scheduled today, but Dr. M wants me to talk to LTFU about speeding up the taper so I can get off of it faster and be able to get up to a normal weight, sleep past 5am, sit still and relax. I have had some Ambien for about a week and have been able to squeeze up to 7 hours of sleep in a row out of it, but I am still up by 4:30 or 5 most mornings and once I’m up, I’m up, and that starts to catch up with me after a while.

So, we’ve had a bit of a rough patch but going to enjoy my health while I have it and we have a lot to look forward to…. Easter, parties, friends in town, our trip to Turkey & Bulgaria for Boyan’s wedding with Sterling’s parents at the end of May, more fun wedding trips this summer, a trip home somewhere in there, and hopefully spring someday in Seattle.