medical update this week

I had another clinic appointment on Tuesday this week and 13 hours in emerg yesterday. I've got lots to update, unfortunately nothing very helpful at all.

The biggest issue discussed on Tuesday was my blood pressure. It has been high lately and I am convinced that it is the reason I have been having the fatigue an shortness of breath, however my doctor does not agree. He has been pushing the issue of checking my lungs. Before this last appointment, I had 3 tests done, but the doc only had the results of the CT scan of my lungs. The good news is that that was clear. The pulmonary function test and endoscopy results were not back yet. The doctor and I are on the same page about the high blood pressure being caused by one (or many) of the meds that I'm on, however he explained why I'm on everything and unfortunately the only option at this point was to put me on a blood pressure medication to try to lower it as I cannot come off any of the meds I'm currently on at this point. While I'm not happy about having to go on more medication instead of less, hopefully this will help me feel better in the meantime.

Another issue that came up on Tuesday was that my platelets have dropped. They are not low enough to require a transfusion and my other (red/white blood cell) counts were fine. The doctor had no idea what could be causing this, but is going to monitor it and if necessary will check my bone marrow again to see if we can get some answers. The appointment on Tuesday was left with me coming back again next week and getting a referral to a respirologist for the shortness of breath and getting an echocardiogram (heart ultrasound).

Wednesday morning just before 2am I woke up having chest pain. By 2:30 it had not gotten better, so Kendall and I went to the emergency room. I got a bed pretty quickly and they hooked me up to a heart monitor, checked my vitals and did an EKG. I saw the emerg doc around 4am and he ordered a chest xray which came back clear and said he would page hematology for them to decide if I should be admitted or if they wanted to order any other tests or leave it up to my transplant doc on Tuesday. A few hours later, we found out that there was no hematologist on call that night and we would have to wait until after one came in at 8am. Sometime around 10am (I think?) a respirology resident came to see me. I was then sent to nuclear medicine to test for a pulmonary embolism. The good news is that test came back negative and the respirologist was able to get the results from last week's pulmonary function test. Everything is clear in my lungs - no infections or GVHD showing up at all. The bad news is that we still don't have any answers about the chest pain, fatigue or shortness of breath.

I never did get to see a hematologist in the 13 hours we were in emerg and we came home and crashed after being there so long on only 2 hours of sleep. I still believe this is connected to the high blood pressure and am going to have to wait patiently for the next test in a couple of weeks. Next clinic appointment is next week, so there may or may not be something to update then.

It's been a rough couple of weeks for me. The shortness of breath seems to be getting worse every day. I've had all of the tests done that my doctor ordered at my last appointment, so hopefully when I have my clinic appointment tomorrow he will have some answers for me. It has come to the point where I cannot even sleep in my own bed because I can't climb the stairs. Walking more than about 10 steps causes me to get winded, shaky and tired and even standing for more than a few minutes is exhausting. 

The tests I had done last week were checking my lungs, however my blood pressure has been extremely high and I'm pretty sure the problem is going to turn out to be connected to my heart and blood pressure and not my lungs. I guess I will find out more tomorrow.

In other news, the joint pain still comes and goes but when it comes it's unbearable. This morning I woke up feeling like I've been stabbed in the knee.

More updates later this week if/when I get some answers... Wish me luck.

Photo Update

Ok... So maybe it seems vain. I know I shouldn't be focusing on this and I am honestly just glad to be alive. 11 months ago, I didn't think I'd be here right now, so I guess this may seem petty, but it's getting really difficult to look in the mirror every day and not recognize myself.

Because of the medications I am on and what I have been through over the last year, I have lost my hair twice which still has not grown back, I have a hunchback, I have extra fat deposits in my face and neck, I am growing crazy amounts of body and facial hair, can't seem to lose any weight that I've put on and now have had to start wearing my glasses most of the time. When can I just be me again???

I year ago...

Spring...

Fall...

Now...

Breakfast

In case anyone is interested... This is what my breakfast looks like every morning...

The count is 17... YUMMY!

Tests, tests and more tests

At my last appointment my doctor ordered three more tests to be done. Two were for the shortness of breath and he said he wanted those done right away and he said we'd do another endoscopy to see if we can finally figure out what's been going on with my throat.

Well the least urgent of the tests was done yesterday. I have now had my third endoscopy since my transplant, so hopefully they will have found something conclusive this time. I think they finally found the right amount of sedation to use on me as well... I was pretty much out for the procedure, but not completely stupid after like last time. The worst part of the whole thing was how late in the day it was scheduled because I couldn't eat after midnight the night before... And anyone who knows me knows I love food.

My next test will be a CT Scan this Saturday at 7am. Not too excited about the time, but I'm likely the first appointment, so at least I should be in and out pretty quickly. This is one of the two tests my doctor ordered to try to figure out why I've been so short of breath.

The third and final test he wanted done right away was a pulmonary function test. Since I haven't heard anything about when this test was scheduled for yet, I called the clinic today to find out what was going on. The nurse tells me that the appointment is booked... for June 2. Somehow, I don't think waiting 6 months for a test when I can't walk up a flight of stairs without totally losing my breath is acceptable. Anyway, I have left a message for my clinic nurse to try to straighten that out. Hopefully I'll be able to get that done before my clinic appointment on Tuesday.

Clinic Update

Well, it's been four weeks since my last doctor's appointment, so it was a long and eventful day at the clinic today. I showed up an hour early for my appointment hoping to get in a little early... No dice. The doc was running about 2 hours behind. Luckily, because it has been so long since my last appointment and I had a long list of things I wanted to discuss with him, he did take his time with me and we went over a lot of things.

My biggest issue lately has been shortness of breath. I feel like if I walk 10 feet I am going to pass out. Since this is new and has been getting worse over the last couple of weeks my doctor is really concerned about it and I will have to have some tests run over the next couple of weeks to see if they can find out why this his happening. Until then, I guess I just need to try to take it easy and not push myself too hard.

I've also had a sore mouth and throat lately. This has made eating extremely painful. The roof of my mouth has ulcers on it which my doctor believes are from a virus, so hopefully the prescription he gave me will take care of that. My throat has been consistently sore since the transplant, but is now worse than ever. This means yet another test. I will have to see the GI doctor for the 3rd time since the transplant to see if they can finally figure out what is causing the pain.

And finally, I have had some severe joint pain lately. No idea what could be causing this. I guess I just have to suck it up for now and hope it doesn't get any worse. If it does, we'll deal with it then.

So I guess, medically speaking, I'm a mess right now and things aren't going as well as we'd hoped... But I'm taking one day at a time and so far nothing has been more than I can manage.

Things Not to Say to a Cancer Patient...

I try to be gracious and understanding to everyone because I know cancer is an uncomfortable topic for most people and it can be hard to know what to say... but I'd also like to get a few things off my chest.

In response to some of the things I have heard over the last year:

1. I know someone who had that cancer and they're fine (or they died).
Great. Did you know that cancer affects everyone differently? Please do not lump me in with every cancer patient you've ever heard of. I am not them. My cancer is not theirs.

2. There's a cure for cancer - they just won't give it out because the pharmaceutical companies make too much money off of treatment.
Gee thanks. While I am hanging onto my life by a thread, you think that there's some magical cure that's being held over my head that I can't have. Let's see how you would feel if I said that to you in the same situation.

3. Treating cancer makes it worse than leaving it alone.
Are you an oncologist? If not, please keep this opinion to yourself. This relates back to #1. Just because you know someone who had treatment, surgery, etc. and their cancer got worse, came back, etc. does not mean mine will. I have a team of specialists who know and understand what my options are and I would prefer to make my decisions with them. Thanks.

4. Did your transplant work?
Yes it worked. If it did not, I would be dead. That does not mean that I am all better now. I have not had a whole host of complications and may continue to have complications for the rest of my life and the cancer could always come back again.

5. But you don't have cancer anymore.
Not exactly. I am in remission. I have had what seems (so far) to be a successful round of treatments. This does not mean that I will not be looking over my shoulder for the next year, 2 years, 5 years... It does not mean that I am 'all better now, and it doesn't matter how long the doctors give as a guideline. Once you have had cancer you will be looking over your shoulder for the rest of your life.

Please understand that I am not trying to offend anyone by this, only to make a point that you should always consider what you are saying and who your audience is before it is said. I have been so overwhelmed by the love and support I have received from friends, family and total strangers over the last 11 months and I couldn't have made it this far without knowing how many people care. Thank you all so much.

Happy New Year!

Ok, I know it's been a while, but fortunately that's been because there hasn't been a whole lot to update lately. I'm beyond the 100 day critical period and while I'm not out of the woods yet, and still having complications there has not been to much excitement to report.

Since I last wrote, I had been having stomach problems and they were concerned about GVHD again. Well the biopsy didn't show any GVHD which means that the doctors have no clue why I was randomly vomiting, but increasing my Prednisone again has stopped the problem. It has since been decreased a little, but they're weaning me off of it much more slowly this time. I'm not happy about the length of time they expect me to continue to have to take the steroids because of the unpleasant side effects, so hopefully the new drug they're trying me on will help get me off the Prednisone sooner.

I have also been having a lot of severe headaches lately. Not sure why and waiting for an appointment with a neurologist, but that will be a long time coming. Luckily, I have nowhere I have to be, so if I'm stuck in bed sick with a headache all day I have a four legged snuggle buddy to keep me company.

The only only other issue I've been dealing with is my inflamed liver. I know... I should really quit all my drinking... (anyone who knows how may drinks I've had since my transplant knows that's a big joke). Again, no one has a clue why my liver is inflamed, but they've ruled out anything serious and say it's most likely either a virus or one of the (many) medications I'm on... Just one more reason that I want to get off the steroids sooner than later. Although my doctor doesn't seem too concerned about my liver it's extremely uncomfortable and feels like something is pushing it's way through my ribs every evening.

That's it for the health issues. Other than that, I have been staying in as much as possible trying to avoid all of the sick people in the outside world. I enjoyed a very busy but fun Christmas and New Years with friends and family and hope you all out there had a wonderful holiday season as well. I plan to be online a bit more now that the craziness of the holidays is all over... Until next time...