A couple of weeks ago, fatigue hit me harder than it has for years. I felt like each limb weighed 200 pounds, and I was trying to move through molasses. My eyes didn’t want to stay open, and I swayed like a baby deer whenever I stood up. My head was full of cotton, and my ears itched and tingled.
I told myself it was just another hill in the wax-and-wane cycle of GvHD. I told myself that the increased soreness was just from trying to walk and keep active. I convinced myself that the sore throat and stuffy head were just from allergies. My tummy pain was surely from the return of my old nemesis, acid reflux (I thought). Etc.
Paul and I had planned an RV camping trip to Watkins Glen State Park in the finger lakes region of New York. The RV is pretty much the only way I can travel nowdays – it is our own space and we can keep it clean and sterile so that I don’t get infected. It is my mobile hospital room, free of all the things that can harm me in normal commercial travel – strangers with germs, children, fungal spores/ mold, viruses, bacteria, insects, iffy restaurant foods/beverages, and sunshine. It’s my big bubble 🙂
The Watkins Glen campground is on a ridge or hill above the river gorge. That made walking over to the gorge and down into it very easy. Paul and I walked over there once or twice, nice and slow – it is one of the most beautiful areas we’ve ever seen. The only thing we weren’t allowed to do was take the dog on the gorge walk, so he had to stay in the RV.
On Thursday, we got up early and intended to walk the gorge from the high point to the park entrance, and then back halfway to the steps to the campground. The downhill parts were all easy enough, but when I turned around to try the steps to return to the RV, my fatigue stopped me like a brick wall. After just going up five steps, my heart was pounding, breath wheezing, and muscles screaming in pain. Well, darn. I tearily asked Paul if he could hike back alone, get the RV from the campground, then pick up his weak & wimpy wife from the park entrance. He was happy to do so, although starting to get pretty worried about me.
After he picked me up, I took it easy and lazed around the campground & RV for the rest of the day. We had talked about moving the RV up to the Adirondacks parks for a few days, but we decided that we had better head home in case I needed to see a doctor. I managed to eat dinner (this was Thursday 6/18) and went to sleep early.
On Friday, 6/19 I woke up feeling more nauseous than ever. I didn’t even try to take my medicine, and I skipped my treasured daily coffee. I knew I couldn’t eat breakfast, and I only had a few sips of water. I told Paul that I would agree to see a doctor, which he had been advising for days now.
We started driving home, with me trying to get comfortable in the back of the RV (couch or dinette seating areas) while Paul drove. I sent an email to my oncologist & BMT nurse, telling them I was sick ~ nausea etc. but no fever. My intent was to go see my Primary Care Physician team in Lorain, because they operate an “express care” clinic within their regular practice there and my PCP has told me she will ALWAYS fit me in, no matter how busy her schedule was. My email to Dr. Dean & Jamie told them I was going to see Dr. Ware, and asked them if they had any tests they would want to see.
Dr. Dean wrote me back and told me to go straight to his offices at the CCF mothership – they would fit me in there to see someone, if his schedule couldn’t fit me in. So that was our new plan – Paul would drop me off at Cleveland Clinic’s cancer/transplant center, and then drive the motorhome back to storage and pick up a car to drive me home from there.
In the meantime, the nausea matured into full-blown and miserable vomiting. RV advantage – no pulling over, just keep on truckin’. Still no fever, though, so a standard Dr. visit was OK for me (if/when I get a fever over 101.5, I have to go to the nearest emergency room – a lifetime rule for me due to BMT).
Paul made record time and dropped me off at the cancer/BMT center right around noon. Dr. Dean had put in orders for a bunch of blood tests, so I grabbed a barf bucket and waited for lab, and then waited to get into Dr. Dean’s exam rooms.
Dr. Dean took one look at me and said that I should be admitted. I didn’t disagree, so he knew I was feeling quite bad. His main criteria for admission was the nausea – if I cannot keep my pills down, I have to get them via IV – I cannot skip them or it could become life threatening. Dehydration and electrolyte imbalance are also potentially life-threatening for me. The CCF transport team came and wheeled me over to my CCv2 first home – the Leukemia/ Lymphoma / Transplant unit in G building. Nice to see some of my favorite nurses were still there!
I texted Paul a request to bring me some clean clothes and toothbrush, etc. as the nurses made me comfortable and started IVs etc. I threw up a few more times that Thursday and Friday, and by mid-day Friday they had found the right combo of anti-nausea meds so that I quit barfing. By Saturday I could start eating – very carefully and slowly. Also on Saturday, the test results came back as positive for parainfluenza virus type three.
Stomach pain persisted until mid-day Sunday. It’s likely that my GvHD made all my aches, pains, nausea, and fatigue so much worse than a non-GvHD patient. The final blood test results came in on Sunday, if I recall correctly, clearing me from any other complicating infections.
I pretty much slept or napped from Friday all the way through to Monday. Nurses, LPNs, lab workers, etc. woke me up every hour or two for blood draws (all IV “sticks” – I have Junkie Arm again!), vitals checks, etc. Not much rest for the weary in a hospital :-) New to the protocol for me this time were heparin shots. I had never “needed” these before because my platelets were always low enough. Now, my platelets were high enough (although still off the low end of the scale) that the doctors worry about blood clots for bed-bound patients. So I had three days (six shots) of heparin into my belly. O.U.C.H.! The shots hurt going in, sting as the meds go into your flesh, and then form a bruise around them.
I was switched back to pills and taken off the IVs once I could keep water and food down – on Monday or so. They allowed me to go home on Tuesday 6/23, with some new and extra meds to make sure that my nausea could be controlled until I’m over this illness.
I am SO GLAD that they were able to get me in to the hospital, though! The patient care in that unit is absolutely top-notch. Even with all my pain and fatigue, I was comforted knowing that I was getting the best care available on the planet.
Paul took care of everything at home, visited several times daily and brought me anything I asked for. He took great care of Duckie as usual!
Thanks to everyone for all your good thoughts. It’s officially summer now, and it’s my goal to stay out of the hospital for many months into the future!
xoxo CC & co.
PS – photo from Watkins Glen the day before hospital admission – I know I “don’t look sick” – you can never tell!
Time for an update, although again, not all that much has changed. Seems like that’s generally the best I can hope for, I guess (?).
Still experiencing chronic GvHD issues in multiple areas and ways, yes pain & discomfort vary (by day, week, even by hour). Eyes, hips, hands, and feet have been some of the more uncomfortable parts in the past few weeks, with added bonus of occasional mouth sores, wrist and neck pain, and various skin issues. The eyes have been particularly painful, annoying, and/or blurry/spotty for a lot of the past couple of months (on & off). For some reason, I’ve also lately had a lot of generalized pain – very uncomfortable to even wear any clothing that binds or is tight, and back to painful for all pressure areas – holding a steering wheel, bottoms of feet, even resting arms on tables etc. Oh well :-) I will try to not think about it.
Did I tell everyone that I’m turning into an appaloosa? or a paint/ pinto, or roan, depending upon your equine perspective. GvHD can cause rashes of the red, itchy, dry, and/or seeping variety (of which I have had few, knock wood). In my case (and common to lots of us) it causes seemingly-random areas of hyper- and hypo-pigmentation (light and dark areas). Most of mine are small and speckle-y. Some folks get very large patches. Anyway, those don’t bother me, in the large scheme of things 🙂
Lung GvHD seems to be stable or improved (yay!). Liver GvHD showed clear via blood/serum tests- and then one of the numbers popped up a bit this last set of tests. Probably not a big deal, we’ll just continue my meds and keep an eye on that with next set of blood tests (monthly).
Mentally, still a lot of fog, forgetfulness, etc. I try to not let it get to me – focus on something else :-) I have a LOT of anxiety and fear about pain, doctors, testing, procedures, etc. at this point. I’ve talked to a transplant therapist (psycologist?) a few times, and that’s been helpful. Hoping to get back in to see her some more.
Oh, hey, good news – I’ve been accepted into a clinical trial at National Institute of Health / National Cancer Institute in D.C. They will perform a VERY thorough, head-to-toe assessment over four days. I think someone said 28 tests and over a dozen doctor assessments… The umbrella, or daddy trial, is a population/assessment type of study where they are trying to assemble and correlate data on as many GvHD patients as possible. No charge to the patients for any of the tests.
The reason I am so looking forward to this is that EACH of the doctors has a specialty GvHD area, and they are all potentially running their OWN specific clinical trials to determine improved treatments for different types of GvHD. I am hoping that one or more of *those* trials will offer us some options, or perhaps point out potential next steps, for treatment of my own GvHD.
My first assessment is probably not until the fall, so I won’t have news from NIH/NCI until then. This is OK because it’s such a slow-moving disease and we are monitoring my status closely.
In the meantime, Paul and I are trying to enjoy this spring and the great weather whenever it pops up. It’s great to be able to spend time together and really enjoy our house and our motorhome when we can.
Next update TBD :-) Maybe not until fall! Enjoy your spring, everyone!
Time for an update, although not all that much has changed.
I’m still experiencing chronic GvHD issues in multiple areas and ways. Pain and discomfort vary by day, and sometimes by hour. Eyes, hips, hands, and feet have been some of the more uncomfortable parts in the past few weeks.
In addition, my lungs do show some signs of GvHD. Upon first test, it looks like about 10% worsening of capacity. Not too horrible. Breathing can sometimes be achy, and I’m out of breath when going up any sort of incline, but it’s not as bad as it could be (and might be, in the future). I just got a CT scan this week to check the lungs (not sure what else), so might or might not have an update on this in the next week or two.
I still can’t work, and I don’t expect to be able to do so for a long time – months or years. I wish I could be that healthy, sharp, on-the-ball person, but I’m still experiencing too many mental & physical challenges to be able to do so.
I have no idea what will happen to my official job… My company and my manager are still awesome, so I know that they’d find a place for me if and when I could return.
I will say that any type of disability insurance coverage seems to be associated with the worst sort of companies and service individuals. They are so nasty, cruel, mean – they make you wish you could just disappear. I don’t think I’d bother paying for disability insurance in the future. If I needed it that badly, I’d just fight SSDI for it, I think. The private insurance companies (all of them, from what I hear) are just not worth the effort and aggravation. It’s never-ending, and a lot of people believe that this is intentional by those companies – the more they torture you, the more likely you are to give up and just go away. It’s sad.
OK, I am going to forget about that now and go pet a nice doggie 🙂
Chronic. Hate that word. I told my doctor today – “I am tired of being the sick girl!” He said he’s working on that.
So, my GvHD is still hanging around, some things better (liver), some things worse (feet & hand fasciitis), some things the same (eyes), and some things that go back and forth and can’t seem to make up their mind – gums/mouth, and other things. One positive thing the Dr. said is that nothing I am doing (ie – walking) or NOT doing could be causing the issue. So if it’s gonna hurt anyway, might as well walk a bit anyway, right? Well, within limits. Like 1/2 hour at a time, I think…
Social Security denied disability. Rumor has it that they do this to just about everyone on your first try. Looking at filing for reconsideration, but it is pretty aggravating. Might have to get an attorney ~ seems that is required for most people. Sad.
My sister is visiting from CA, and thus our house has had some updates because I couldn’t care less about decorating and she’s very good at it – very motivated. Last updates / purchases were the last time she was in town (more than 6 months ago). So it’s good to have a designer visit :-) I *hate* shopping. Would rather give blood.
Oh, forgot to finish the medical report. Since the fasciitis is getting so bad, the Dr. is considering adding in Rituximab. I had this drug at the start – it targets B cell immune response. My course would be once weekly IV infusions for four weeks to start. First treatment would take 6-8+ hours, and others usually 4-6 hours each.
Side effects are just lowered immune system and low white blood cell counts. My current treatment (tacrolimus) is more effective at moderating T cell immune response, so my Dr. hopes that adding in the B cell drug, we can improve overall symptoms.
If this doesn’t work, we’d possibly move on to photopheresis. That process involves taking the blood out, treating it, and returning it to my body. Those sessions take hours also, and different hospitals have different schedules for patients. Some people go once per week for six months, some go 5x per week once per month for six months. That would all be TBD… Also, if I had to have photopherisis, I would have to have a port or multiple-lumen central line put back in (surgery). Here’s CCF’s blurb on the treatment: http://my.clevelandclinic.org/health/treatments_and_procedures/hic_Photopheresis
Lastly, I leave you all with my draft pick for the latest decorating round. I think she looks like Kevin, the charming bird from the movie “Up” – don’t you? (photobomb by sis)
So Dr. visit was yesterday, and I’ve had a few dozen blood tests come in since the last blog, also.
Bottom line is that I submitted my paperwork at my job to start the process for medical disability leave. Very sad.
That said, it’s also like a weight off my shoulders. I can focus on getting better without worrying about messing up. If I have insomnia now, I can just take a nap whenever I feel like it. I can go to any doctor appointments any time, without trying to fit them in between meetings. Pick up prescriptions, do physical therapy, whatever. Time is mine, all mine!
…and three hours later… umm sorta bored :-) I finished up a bunch of work stuff, straightened out some bank accounts, cleaned and organized, and baked healthy runner’s bars for Paul. And now it’s 10AM.
The hospital had been recommending that I take a leave of absence, but I had honestly felt a bit better since the last blog post and before this doctor appointment yesterday. So I thought that maybe I would be able to continue to get better while I continued working. But then I saw my blood test results, and a lot of the values were out of range – too high or two low, and almost everything had gotten worse since my last set of similar tests. He is adjusting some of my meds a bit, again, and we’ll continue with weekly blood tests and monthly extensive labs and doctor visits.
To me, the lab work results validated the doctor’s advice to take some time off. Well, that and a BUNCH more mistakes that I made at work.
Anyway, will see how the leave goes. Worst case, disability is denied and I’ll be on unpaid leave. This could happen – you hear and see a lot of horror stories like this when you start to research. I am pretty sure that my wonderful company would always take me back to work, even if I was severed for a while and even if I had to do a slightly different job. If they couldn’t for some reason, I guess I’d be OK living on macaroni and cheese for the rest of my life 🙂
OHAN so exciting – I get to have my first colonoscopy this week! Limited diet yesterday, today, tomorrow, and prep starts tomorrow afternoon. I get extra antibiotics to take prior to the procedure (prior to any procedures, including teeth cleaning!) due to my suppressed immune system.
OK enough blabbing, off to find something to do that is within my current capabilities and restrictions 🙂
ahhh relief. I was getting annoyed and grossed out by my head/ hair/ scalp issues. GvHD or medication was causing some bald spots and hair breakage, and also a lot of stinging, burning, and painful sensations. These were made worse by the hair pulling or tugging – just its (3-4 inches of) weight, or when the hair rested against collar and I turned my head.
At any rate – it’s gone. Back to chrome. What a relief. Sorry that Paul has to look at this all the time, but it feels SO much better.
Also, it’s a relief to not have to look “normal” (as normal as I ever did, anyway) when I am feeling the opposite. I didn’t like that disconnect. When people would ask how I felt and I responded with honesty (“not great,” “having some issues,” or “fighting some complications”) they would say – “Well, you LOOK healthy!” It sounded like an accusation – like I was lying about how I felt, or my appearance was a front. Anyway, now it’s not. Now, I pretty much look like I feel.
Next doctor visit is January 5th. I’ve been having some increasing symptoms of GvHD of the skin that make it seem like it’s heading towards the GvHD version of scleroderma, which could be quite serious. I believe that Dr. Dean will be increasing my meds again, which will undoubtedly increase the side effects of the meds. He also told me yesterday (in email) that he’ll be ordering a skin biopsy (or biopsies) to log the official GvHD diagnosis. The Dx so far has been by observation rather than by clinical test results. I’m pretty sure he wants to do this so that there is no question by insurance or Social Security should he recommend that I take disability leave from work. Which I’m pretty sure he will recommend.
I’ve been messing up so badly at my job the past few weeks, it would be funny if it wasn’t completely the opposite of how I need to perform. I made a $58B (BILLION) mistake on a spreadsheet. Then I invited one customer to another customer’s meeting. Then I invited one company that we wanted to discuss to a meeting that was supposed to be discussing their performance in confidence without them. Then I missed – just completely forgot and didn’t notice the reminder – one of my OWN meetings! This is in addition to dozens of emails sent to the wrong people, or where I missed seeing something important or ensuring that someone else knew something.
So a job that *is* fun, that I’m *excellent* at – when healthy – is now stressful because I can’t do it to the level it needs to be done. I CAN NOT let my mistakes impact our customers or my company.
Hopefully, this is just temporary. My plan is to work with the doctors, take all my meds as instructed and without stressing out about the side effects impacting my job, until they CURE my GvHD and wean me back off all the meds. Then I hope that there will be no LASTING side effects – nothing that extends past the time when the meds are cleared out of my system. THEN I can go back to work and be the best darned project manager in the world.
Will know more for sure after I see Dr. Dean on Jan 5. Until that point, just trying to hold it together!
Enjoy the chrome. Needs some bling, eh?
So, doctor visit yesterday and the end result is that we don’t know a whole lot more about what’s going on with my medical situation, but he wants to stay the course in several areas.
Number one – he will be upping my tacrolimus (prograf) again and also keeping me on prednisone for a while. Weekly blood tests will continue. The problem is that both of these medications are hard on my body and my mind. Indeed, it’s impossible to separate which of them are causing various symptoms, and some of the issues could be caused by the GvHD itself.
Current issues and side effects that I’m experiencing include first and foremost – pain. Joint pain, eye pain, and increased pain sensitivity to everything. Neurotoxicity from the tacrolimus is a likely factor in most or all of these, and prednisone can also cause some or all. The GvHD can also cause the joint pain and generalized pain. The joints hurt just sitting around or bending them. Elbows are the worst, and working on the computer or even bending them much causes them to turn hot, angry, and red (and very painful). They wake me up at night. All my joints do – it sort of moves around insomuch as the loudest one is the one you notice :-) Last night, it was shoulders. In addition, my heels/feet hurt, and driving (right heel pressure) is pretty bad. I’ve been making Paul drive any time it’s more than just a couple of miles.
Other issues include something called paresthesia – skin tingling/ prickling/ burning. I get this in my face, hands, and feet. In the hands and feet it’s often before or after an incidence of Raynaud’s (loss of circulation/cold, followed by blood-rush back / burning). In the face, it’s just weird and can have numbness before or after it, and so far it’s been mainly in the upper-lip / upper cheeks area.
Another fun symptom is tremors / shaking. I have had this from the tacrolimus since the start, and as the Dr. ups the dose it gets worse, of course. So far it doesn’t impact much other than looking like a little old lady and being unable to sight in a bb gun enough to keep that fat squirrel from steeling my woodpecker’s food 🙂
Eye changes and issues: GvHD and light sensitivity. The GvHD seems to be coming under control with Restasis, which is liquid cyclosporine (similar to tacrolimus) drops. HOWEVER, the Tacro causes similar symptoms – dryness, pain, and photophobia (the light sensitivity). For sensitivity – read “pain” – bright lights and the computer hurt. I keep everything on very dim and I don’t drive at night. There is also a *lot* of blurriness and spots/floaters – these wax and wane, but it’s bad enough that I can’t read street signs and wouldn’t trust driving anywhere without a GPS telling me where to go. I can see other cars, but that fat squirrel – um, probably not so much.
Skin – well, there’s the GvHD changes of discoloration – both light and dark spots, speckles, and dashes. In addition, both GvHD and the prednisone can cause other skin changes. I had a nice wine-colored rashy/patch for a couple of weeks – that’s fading now. The prednisone also causes “tissue paper” skin that tears very easily, heals poorly, and is sensitive to just about everything.
Do you want to hear about gut issues? Hmmmm well digestion can be… um… variable. Things can progress either super slowly, or all of a sudden in a hurry :-) Enough o’ that – right? 🙂
Mental issues? OH YEAH. First – insomnia – both prednisone and tacrolimus cause this. As does stress, not that there’s anything to be stressed about, right? :-) I’ve been getting by on 2-4 hours of sleep per night since early November. The prednisone and tacrolimus can also cause moodiness, depression, lack of concentration, lack of ability to remember things, lack of judgement or a filter, and loss of control. Stress, anxiety, and insomnia don’t help those either, do they? Now, the Dr. will give me meds for anxiety, pain control, and insomnia as needed – but those will mess my mind up in other ways, won’t they? Catch-22?
Lastly – immunosuppression continues and will be my status quo for many months and probably years. So – staying away from germs, crowds, salad bars, kids, bacteria, viruses, molds and airborne fungus. Continual antibacterial and antiviral meds, and potentially adding back in anti-fungals.
What bothers me most in this are two things. One – this is hard on Paul. I know it’s no fun for him to have a miserable wife :-) so I try to not bug him about anything, but it spills out sometimes. Past few days, especially.
Two, it’s hard on my job. I have a very, very fast-paced job requiring a super-high level of concentration and functionality. Millions of dollars and sometimes life-and-death computer systems depend upon my management of customer projects. I *cannot* drop the ball – unacceptable. The job is great and fun – I was born to do this – but *only* if I’m doing a good job. It’s scary, stressful, and almost torturous if I’m not keeping up, or messing up, or causing problems.
It is fun to be smart and high-functioning. It’s terrifying to see it chipped away – even if only temporarily. No one is harder on me than I am, and the beatings shall continue until performance improves :-) Or something.
So one of the things I asked Dr. Dean was – well, if the treatment (GvHD control) is making me so sick – can I just stop it? He said: NO, absolutely not. Very bad things would happen. I left it at that, at the Dr. They are sending me to see the social worker and maybe psychologist – they think I need help navigating my “path forward” and my “new normal.”
I did check with my online GvHD community – shot over the question about whether anyone had ever just felt like stopping the GvHD control meds. Many answered (seems like everyone feels like pitching these meds – they’re hard on us all). Some *DID* stop the meds for a time – and experienced terrible, irreversible systemic damage that they regret. One lady is now on the waiting list for a double-lung transplant. Another had terrible, horrible gut problems that put her back in the hospital. I’m sure I’ll hear more examples of “why not” over the next few weeks, but I’m convinced. Continual joint/eye/general pain is probably better than a lung transplant and other very dangerous GvHD.
But still – I wish there were a better way. An easier path.
Hey – on the bright side – my liver levels are good – indicating that the Nanobot control has stopped the GvHD of the liver nicely! And the GvHD of my mouth (tongue burning/pain) is also in control! Two wins for the nanobot control meds!
Why don’t you guys suggest some good books for me to read? Take my mind off of things 🙂