Friday, August 24, 2007

No more O2

That's right I am off the oxygen tank - yipee! I had my 6 month post SCT (transplant) appointment today at Hopkins. My lungs quote still sound like crap (my doctor is young) but I am breathing better and he got that damm monkey off my back. My PET scan shows the sinus and lung infection but other than that I am clean as a whistle. My counts are dropping again so I have to go back for a follow up in two weeks. He is also concerned about my meds from the ENT and I have to monitor my fever now that I am finally done with the steroids. I must admit I will miss them since they give me a nice pick me up to deal with the kids. My energy is in the crapper without them.

I will get scanned again in three months. He actually said he will scan me every 3 months until May of 2009. A little overkill in my book but Dave is happy they are following me so closely. I guess since I had THE crappiest of lymphomas then I get special attention. I mentioned that I know some fellow HD patients that get Valium around scan time and he was ready to whip out his scrip pad and hook me up. I am not ready for the drugs just yet. Hopefully they will get easier and I won't loose sleep, have the nightmares, and worry for about a week. If that doesn't end I guess the drugs would help. Especially since going back to work and taking care of the little z's isn't going to allow for a week of scan crap.

Lee meet his teacher today and thankfully is the same teacher he had his evaluation with in May. We also saw his room, seat assignment, and took the whole school tour. He is ready to go and I think getting a little excited. I think mom and grandma are more anxious and emotional about this Monday than him sometimes. I always thought that Alex would be the hardest since he is the baby but sending Lee is not a walk in the park.

Things are going well and I am thanking god, knocking on wood, and counting my blessings.

I will post pictures Monday of Lee's first day and pictures Tuesday of Lex's birthday.

Thursday, August 23, 2007

Clean scan

A surprising turn of events. My doctor called ME this morning; when does that ever happen.

He called to let me know my scan was clean! No lymphoma to report so I am still cancer free. Great news! I still go up tomorrow to see if I can get off the O2 tank and check my blood counts. All the infections and little crap are a breeze - as long as I am cancer free.

Have a great weekend.

Waiting for results

I had my PET scan last Friday and I am waiting for the results. Dave and I go up tomorrow (Friday) morning to meet with the doctor and review the scan. Dave was out of town earlier this week and I have been busy with the kids. We are gearing up for school, getting ready to go back to work, and Alex's birthday. Monday starts a new chapter for all of us.

I am having crazy dreams about the test results. I am actually not getting much sleep between nervousness about the scan, Lee coming in to sleep with me, and Alex waking up wanting a bottle (he is off the baba for good). Hopefully the results are good Friday and I will get a good night sleep. Dave can deal with Alex and his fits for a bottle.

I will post the news tomorrow once we get back from the hospital.

Wednesday, August 15, 2007

Tubes, scan, and Alex

Okay so I got the tubes today. My ENT assured me that it would 1) help me hear 2) drain my fluid behind my ear drum/help my infection and 3) not make me miss Alex's birthday. Number three is my biggest issue. I will be there for his first birthday come hell or high water. I have missed enough of this little guys first year I won't miss the birthday. The hearing I have learned to deal with. Amazingly I can already hear better and did as soon as he put the tubes in. Now everything is so loud!

Number 2- I still have my sinus infection and the extra time on the antibiotics did squat. My infection actually go worse. The ENT also thinks whatever is going on in my sinus is definitely draining down into my lungs and holding up the show in that healing too. Since I am still on the O2 I gather my lung infection isn't completely gone. I need to get a pulmonologist and get all this sorted out. Better yet I need a good general practitioner to help me with everything. I have way to many doctors, doctor appointments, scans, follow ups, and medical issues these days. I just want to go to one person that knows what the hell they are talking about and refers me only when necessary. Is that too much to ask? And oh yeah I don't want this person to reside in Baltimore!

I am actually going to call back up to Hopkins tomorrow about my scan this Friday. Since I have all this infection going on right now why the hell do I need to get this PET? It is going to be skewed by my lungs and sinus - so can we just skip it for now? Or do I really need to go through another false positive ordeal again? I remember last time my oncologist did this and it sucked. I guess if I light up life a freaking Christmas tree then okay it makes sense. But instead it will be this whole gray area crap that we will have to wait for the next scan to sort out. So why not just skip this one? I doubt he will agree with my oversimplified logic and not let me off the hook but I have to at least try. God I would hate to be a doctor and deal with pain in the ass patients like me.

I was thinking about my recovery time and how I still need to rest (be that turtle) right now so I can get on with life. You would think not working would present itself with this abundance of time to rest and relax. But I have found between my doctors appointments and the kids I get about 1 or 2 days a week of actually resting. Yesterday was my one day this week and I actually got a nap. Next week Dave is out of town again so I am back to single parent mode. Oh well, it is what it is.

I think Lee got these pictures of Alex in bull dozer/king kong mode. He doesn't just play with toys he thinks he needs to climb and stand on them. Enjoy!

Monday, August 13, 2007

7 year itch

Dave and I celebrate our 7th wedding anniversary today. I don't think we are itching, at least I am not, but maybe I should check in with Dave to see if he is feeling squirmy. Since we have been together 13 years I always feel like our wedding anniversary is kind of a sidebar. I still can't believe the guy I meet in Morgantown, at a party, when I was 19 yrs old is the guy I ended up sticking with, having 3 kids with, and loving to be with so much. Dave is by far the person I have a blast with, hands down, any night of the week. We have have fun doing just about anything together or nothing at all. I hope my kids find someone they fit with as much as I do with their dad.

I won't sugar coat things here however. This cancer bull s#&t has tested us. We have our issues, we fight, we probably could use a couple of sessions on the couch to deal with the residual of these past couple of years. Who wouldn't? But I am impressed at how well we have gotten through everything. I guess Dave takes his vows seriously when he said in sickness and in health. Looking back I was insistent on that line since my mom had been sick with breast cancer. A little foreshadowing on my part perhaps. Hopefully the years of sickness are behind us and we can have the rest in health. I scanned some pictures of us in college, Atlanta, the wedding. A nice blast from the past. I wonder if this would intrigue my husband enough to actually visit my blog?

Update on the medical stuff. Tomorrow is my follow up ENT appointment. My hearing is actually getting worse and I can't hear in my other ear now. I imagine my ENT will want to do the tubes. I called up to Hopkins and they suggest waiting to do the procedure after I am off the steroids. Since steroids lower your immune system and masks any fever.....blah blah.... Fine by me I am pretty much against the tube idea and want to wait. I just see it as another possible set of complications and don't want that right now. I am feeling more tired since my steroids are tapering off and guess that my congestion is getting worse because of the taper as well. I just want to play it safe, rest, and take the antibiotics in hopes that it will go away. I will not do anything to jeopardize being present at Alex's first birthday. If that means avoiding the tubes and dealing with this hearing loss then so be it. I REFUSE to miss another kids birthday.

Thursday, August 9, 2007

My bones

I had my Bone Densitometry yesterday. I thought I would pass with flying colors since I am a pretty good milk consumer. Well I guess I was wrong. According to the test I am Osteopenic. The tech who did the test said my gyno will be in touch to go over what we need to do about this. I did some reading last night on the web and I guess my results are very typical post transplant. However there are not a lot of studies or recommendations on what meds, if any, people like me should take. I guess a call up to Hopkins on this one wouldn't be a bad idea.

The one thing I can do is increase my calcium intake to 3 servings and get some exercise.....once I am clear of all these infections.

I need to go back an dig up the consent forms I signed pre transplant and radiation. At least then I can refresh my memory and be prepared for all these things that keep popping up. I am still thankful to have my clean scans. I guess I am just surprised at what a number the transplant and rads did to my body. When your doing the consents you will just sign anything to save your life. Now it's like I am out of this survival mode and I am going back and dealing with the residual. Still it is a better place to be in then fighting for life.

Next I need to get my eyes checked.....that probably won't be as straight forward as I assumed. Nothing is straightforward with my health anymore. Maybe I should just start ignoring this stuff and avoid the doctors. Ignorance can be bliss.

Tuesday, August 7, 2007

I have been visiting my local doctors a lot lately and it is weird to see them and give them the past year in a quick update. My medical history is getting way to long. It is nice however to say my last scan showed I was cancer free.

I have my next PET scan scheduled for Friday, August 17. This scan will be about 7 months post transplant and 3 months post radiation. It will be nice to get another clean scan and a break from Hopkins. I couldn't have asked for better doctors, nurses, and care but I just want a nice long break from that place and any sickness.

I am feeling better. I just keep trucking with my oxygen and pills. People definitely stare at me in public. You would think after all the months I got stares with my mask and baldness I would be used to it - still not. I think it is my age that freak people out. It is like they don't want to see a mom my age sick. I guess the way I hate seeing the baby's and kids up at Hopkins.

Once more doc appointment this week then I am free and clear until next week.

Sunday, August 5, 2007

Hearing update

I visited my ENT on Friday and I do not have permanent hearing loss. Rather I have a sinus infection that is causing fluid to back up behind my ear drum. My ENT put me back on the antibiotics my oncologist just took me off of. The drugs helped with my pneumonia but I need to stay on them longer to clear up the sinus infection. If the antibiotics don't resolve the fluid thing they will put a tube in. It is a wait and see for about 2 weeks. There is a good chance I will have to have the tubes but I am hoping not since it comes with a set of possible complications I don't want to take. Anything that is straight forward for the majority of the population is so not for me. My immune system and body are just beaten up a bit and I need to take as many precautions as I can. Oh well - slow and stead is my game plan. I am a tortoise.....repeat...don't get ahead of are a tortoise. I think this mantra will keep me from any more hospital stays.

We had a great weekend with the kids. Alex is getting so BIG. He is everywhere and closer to walking each day. We have finally decided for his birthday we will fill the house with balloons. He is obsessed with balloons so this will make him happier than any present we can think of.

Thursday, August 2, 2007

I am back from Hopkins and it is official - I don't have valley fever. Just pneumonia. My oxygen levels are better but my doc wants to keep me on the O2 for another week then check again. I am done with my meds for the pneumonia. I am still on the steroids and I guess my immune system is at higher risk due to them. So now it is a wait and see if I spiral back into sickness in which case I call the docs asap. Also need to resort back to less public interaction maybe until I get of the steroids.

My hearing loss is the next issue to deal with. I have my ENT appointment tomorrow so hopefully we can get to the bottom of it fast. My oncologist said it is a possible side effect of everything I have gone through, including these latest meds, but it is rare. So I am thinking I just have some infection/blockage my primary doctor couldn't see.

Oh yeah I also got the official report that I am in menopause. At least I only suffered for a couple months with hot flashes. Not too bad considering many women go through years of crap. Does this mean my over the hill party can be moved to 33 instead of waiting around for 40?

So I am resting in between raising the kids and going to endless doctors appointments. I feel better but not 100%. I guess I haven't felt 100% in long time. It is funny since people see me and always say how great I look....what a little bit of hair and a suntan does for your overall appeal in society.

I will post tomorrow about the hearing loss. In the meantime my oncologist said no swimming. Do these people not understand I have a fish for a son? I guess they didn't give me a scuba tank anyway so why do I ask these questions? I always forget my limitations and just want to do my normal life.