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Wednesday September 30, 2009

Good news today!  ;D The biopsy on the rash says it is not from his disease! Yea!

Still don't know what caused the feet swelling, but we got the okay to go off his Lasix and back on his regular blood pressure med. So if they swell up again, its either his blood pressure med or his heart probably

Monday September 28, 2009

Since Labor Day, we've been to Urgent Care, The ER and Michigan THREE with Mark. Over Labor Day weekend, his legs and feet swelled up horribly and took over three weeks for the swelling to go down (thanks to double Lasix)  and he can barely walk because of the tenderness. His labs have been good, though, so no one can figure out what's going on.

He went to have an echocardiogram done this week (locally, luckily) and the hospital refused to do it since they said he had one about 4 months ago and the insurance would not pay for it. And this has to be the week BOTH our primary care physician and our main specialist are on vacation at the same time...so no one could confirm it is medically necessary. He did have a biopsy done on the rash he has but it may be two weeks before we hear the results back on that.

I am beginning to ponder the idea of quitting work soon if he doesn't start doing better. Its getting to the place I feel like I need to be with him...

       

Sunday Oct. 5, 2008

Change in plans. Mark is now going to have his eye surgery. His eye is just getting worse and worse and it is starting to affect his other eye as well. The surgery will be Oct. 30. He still is not doing the greatest. He had to go without his pills for a few days simply because we did not have enough money to pay for them and he started doing so poorly I had to borrow the money off my dad to get them. We also don't have enough gasoline for me to go to work this week. Luckliy I don't work until Thursday so maybe I can work something out. Blah! Also Friday night our van got hit. Its been sitting on the street since we have a large dumpster in our driveway right now.

So 9:30 a knock comes on the door. Our neighbors came to say someone hit our van and took off. Luckily the only thing really wrong is that the left mirror is broken (but I have a restircted license because of my eyes that I must have left outside and inside mirrors). But its just buggy that no one seems to have the common courtesy to stop anymore -- always looking out for themselves.

Anyways, it was funny when the police came, the van that hit ours just happened to come down the street (our neighbor ID'd it) so the cop took off after him and he went down a side street. At first he slowed down and we thought he was going to turn around and come back. But no, he took off.. again. They finally got him, and he denied that he did it. So we might have to go to court if he disputes the charge (only charge they can really get him on is Failure to Control a vehicle since there is no injury and very minor damage) but if he disputes the charge (which it sounds like he will) we'll have to go to court.

And I don't even want to report it to our insurance because we can't pay the deductible and its probably not enough damage to even do so, but still.....BLAH!
But Marky and I did have a good Vasculitis Walk yesterday. We turned it into a mission for Dr. Steel (www.doctorsteel.com). You can see photos here:
www.photobucket.com/albums/aa259/jedimomg/ISTA Oct. 4 08

Saturday Sept. 13, 2008

  A LOT has been going on,

I started online classes at BGSU and had to drop a class because my computer would not open the files, even after several attempts with tech support help. Luckily it was only 1 credit .. but only 5 weeks long so I was running out of time.

Big Mark has had multiple problems. He had his labs done over a week ago and they called back immediately saying he had a major infection, so they took him off his Cytoxan and on Cipro. Cipro worked, but even being without his Cytoxan a week is making him not do well. We were up in Ann Arbor yesterday though and he gets to start back on it. They think it was a bladder infection since blood showed up in his urine, but there is always some blood with all his stones. He now is getting liver function and kidney tests as well as all his other labs.

Also he is NOT going to have the eye surgery, at least not at this point in time due to too much inflammation in his nose. He has blocked tear ducts and they were going to reroute a new tube into his sinuses to drain the tear ducts, but to do so they would have to drill into his skull. Now they are afraid that the tube they would put in would just get all crusted over anyways and wouldn't do any good, or would get more infected. We are all hoping if they can get his WG under somewhat control the problem may go away anyways, since it could just be inflammation causing the problem anyways.

Marky has had his share of problems too at school. We are now homeschooling him through an online program through the state which gives us a computer and books and such and even helps pay for your internet. Its only been a few days but he seems much more relaxed and able to concentrate. And it actually helps us out when we have to run al over becuase he can do his work anytime of day and we can arrange to have days off if needed.

And me, I'm stressing as usual. BG is going good but I am having problems fitting everything in. I keep hoping things will smooth out a bit now that hopefully most of Mark's dr. appts. are over til the end of October esp. since the eye surgery is out. BLAH! Work is okay, kinda slow but I am still getting my 2-3 days a week. It'll pick up soon enough for Christmas.

Sorry to write a novel, but there's been a lot going on. Oh, I also had to get new glasses since my eyes are screwy. My pressure was really up so i need to get a ophtalmalogy appt. soon too. Still trying to get used to the new glasses                                         

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July 15, 2008

Mark has been experiencing eye problems for the past several weeks. His main compliant was his eye watering and matting up at night. Today we were able to get him in to see a local ophthalmologist, Dr. William Schemmel, who examined him. Dr. Schemmel believes there may again eye involvement from Mark's WG. Dr. Schemmel said he does not believe there is any bacterial infection. He put Mark on TobraDex drops, 4x daily for a week. If the infection does not clear up by then, he will put Mark on prednisolone drops. He is not sure of the cause of the problem, however, but feels it may be WG-related.

July 5, 2008

Finally got a call back from Mark's rheumatalogist. He was waiting for Mark to finish his antibiotics before making a decision. He basically said he didn't know what to do anymore. He is taking Mark off all the meds he is currently on (Methotrexate and Cellcept) and going back to his originalmeds... the "cocktail" of Cytoxan, Bactrim and Prednisone. Well, problem is, Mark has already had more than the "lifetime allowance" of Cytoxan which is why they took him off it to begin with, and ALSO the pill was not working as well as it once had, which is also another reason the took him off it. AND the dosage he will be on is not as strong as what he was taking. So I am very leery about this.

He could go back on the Rituxan infusion he had before (he has had 3 separate sets of infusions), which I think DID seem to help, but once it was disclosed about the risk of brain anuerisms and tumors it really scared Mark. So its a toss up over which is worse.

June 23, 2008

Been busy the last few weeks.

After The appointments with the rheumatalogist and pulmonologist, Mark got a bronchioscope with a "brushing" biopsy and a "washing" lavage on June 9. It took over 10 days to hear about the results, but it came back clean for cancer. However, we did find out that his C-ANCA blood work -- which is an indicator of WG disease activity -- did come back high. So the disease is active, BUT the numbers are not as crazy high as they have been in the past. We are still waiting to hear how the doctors are going to treat this flare.

Here is a video showing one day's worth of bills at our house.

http://www.youtube.com/watch?v=F5WI-koHJiU

June 3, 2008

Its been quiet... to quiet... I knew something had to break.

February 29. 2008

Big news for me!

I have hair!!

Woo-Hoo!!

Went "hair shopping" last week and ordered a custom-made piece and I got it today. I am amazed at how much more confident I feel. I actually walked through the mall and didn't feel like people were staring at me.

One bad thing is though, it has more gray in it than my real hair did, go figure. LOL


Bad thing is, I lost my digital camera at Christmastime and haven't been able to find it, so all I have to take pictures with is my camera. And I don't know if I can upload those pictures, but I emailed them to my email and here's the link for the slideshow. I hope it works.

http://pictures.sprintpcs.com/share.do?invite=2EfrJC5N77kBSUQh0ovh&shareName=MMS&messageState=RETRIEVED

January 3, 2008

New year and good news! Yea! 2008 is already shaping up to be a better year!

Went back to the surgeon today and got the news about my surgery. No cancer!! Hooray! You can bet I was worrying about it. And it was exactly what the surgeon thought -- Endometrioma - cells from one of my C-sections getting into the womb and growing. (So maybe in a twisted way you could say I was pregnant for 5 years (hee hee) )

Also this should NOT come back and it should take care of a lot of the discomfort I've experienced with my period over the years.

I'm sure I will still have some pain, since I always have had pain and heavy days, but if this takes care of the really weird stuff I will be happy

Forgot to mention that due to the complications of my surgery, I will still be off work another 2 weeks. Right now I am scheduled on Jan. 17th I think

 December 28, 2007

December 11, 2007

Surgery scheduled for Dec. 27th. Time yet to be determined.

December 10, 2007

Went to my family doc today for follow up. He seemed kind of perplexed by what was happening since the test results showed everything was fine -- pancreas, gall bladder, appendix, etc.  He too suggested it may be scar tissue built up from my C-sections. I am not sure about that. It would be an awful lost of scar tissue for that size of a mass. I guess it could happen though. He was able to make an appointment with a surgeon for me for tomorrow, which is good since I feel awful. No energy, no appetite, nauseous and in pain. I just want whatever it is  taken out!

December 8, 2007

You won't believe this....

For the past few years, I have been having lower abdominal/pelvic area pain. When we lived back in Michigan, I had this checked out -- had ultrasound, CT scan, etc. Then they couldn't find anything and it was suggested (never diagnosed) that it was endometriosis. Of course there isn't much they can do about that. A few other times I have gone to the doc or Urgent Care cause it got bad, and then they told me basically the same thing.
 
Last night I went to the ER cause it was pretty bad and I was nauseous. Actually its been pretty bad for about a week or so. They did pelvic, blood, urine and then did a CT scan.
 
You guessed it... they found a 3 cm x 2.5 cm mass.
 
They are pretty sure after all this time its not cancerous after all this time. But it could have become cancerous, like my head did. It could be a hematoma but I don't remember any injuries to that area. So now I have to go see my family doc and get set up to see a surgeon to get this biopsied removed! So at last I'll (hopefully) be free of the pain. But still, another thing to worry about. And I have to try to get this done by the end of the year so my (horrible) insurance will cover it. (Good luck there I know.)
 
Of course this is such a good time of year for me to try to get anything done! I work all weekend and have one day off next week and continue on until Christmas. Yeesh!
 

December 3, 2007

Things just keep coming...

Our van (which we have owned for about 6 months -- it is 10 years old, but still has under 100,000 miles and is in decent shape) is having problems. We just had the radiator flushed and serviced a few months ago, but the heater is blwoing out cold air. Mark looked at the fluid levels and could not see any fluid in it. So we have a leak there somewhere. Plus there is a strange noise which we can't figure out if its coming from under the hood or from a wheel or tie rod. And our ancient pick-up truck needs brakes so badly I am afraid we won't stop one of these days.

Last night we put up our Christmas decorations. As we did so, our toilet started to flood. Yeesh. Mark turned off the water to it and plungered the heck out of it, but now we can't seem to get the water to start flowing again. We've been flushing by pouring water into the tank.

Our city requires certain bags for garbage pick-up... ones with their logo on it to help offset the cost of dump fees (although we pay for refuse service already). However, we canot afford to buy these bags -- they are $6.25 for 5 bags!

We also have no gasoline in either of our vehicles. I have to go to work on Wednesday and hope I have enough to at least get there!

Mark still is not feeling the greatest. His stomach is giving him problems. He probably has an ulcer from all the stress.

You can see why I am so down this year.

November 27, 2007

It's been over a year now since my surgery. My head still has a large scare, as does my leg.

I have been depressed much of the year. I dislike the way I look. Scruffy hair that is coming in, a huge scar, a broken front tooth due to it softening up from the radiation, and one eye. Not to mention overweight.What is there to feel good about?

I also quit one of my Star Wars costuming clubs due to being flamed publicly by one of their "captains". A person who is in a leadership position -- no matter how small -- should not act that way. Others look up to them. The misunderstanding goes back about two years and he just won't let it go. I was also unhappy as to how the others in charge of the club handled the situation, so I quit. I am much happier at The Jedi Assembly anyways. They are more fun. I have a lot of friends there.

Money has been extremely tight these past few months. Bills coming in from my radiation. As far as I can figure I owe them about $26,000. My so-called insurance paid the radiation clinic a whole $400. The "critical care" insurance I had will not pay since they classify my skin cancer as a "pre-existing condition". Argh. Christmas is going to be tight -- again. All I can foresee is gloom. Mark has not been feeling well, despite his surgery for his gall bladder. His stomach is giving him trouble yet when they scope him, they cannot find any problem. This fall has brought his cough back again and he cannot seem to shake it. He is supposed ot go up to U of Mich. December 12, but I doubt we will be able to afford the gas at over $3 a gallon.

I just wish we could get a break.

July 27, 2007

I apologize for not having updated my blog in a while. Things just got too much for me for a while there and I had to just deal with life, much less a web page. I have been on two antidepressants, but they didn;t seem to work well together for me. Our family doc finally took me off one and doubled the oterh and I think it is helping much more.

I did have my moles removed, finally. They were benign, thank goodness. The insurance finally decided they would pay. I got the bill, though, and they paid a whopping $400! I still owe like $1200 to the doc. That insurance just totally reeks. They are paying NOTHING towards my radiation since they consider it a "pre-existing condiiton" even though I did not have the diagnosis at the time I signed up for the insurance. So that's another $12,000 to the oncologist alone and another $15,000 to the cancer center itself.

Mark had his gallbladder removed a week after I had my other moles removed. Luckily there were no complications, but he is still having problems with severe pain in his xiphoid process area. We do not know if it is the xiphoid itself or if due to irritation of the esophogus. He has some very major and painful attacks still, accompanied many times by nausea and vomiting.

My head has healed up pretty nicely. My hair is probably about an inch long, maybe a tad shorter. If it weren't for the baldness I wouldn't even worry about a hat or a wig. But I still have the bald spot, and I am not sure what to do about it.

Also during the past several months, our van completely died. It had served well, with over 225,000 miles, and has had recurring problems. But this time the transmission went out completely. We junked it to a neighbor who was supposed to pay $200, but he still owes us $25 since $175 was all that he had on himself in cash that day. We could have really used that $25.

Then we had a situation where a company put an automatic payment through our account 2 weeks too early, thus messing up our account horribly. The bank froze our account, and we still have not gotten that situation completely unravelled yet. We lost an entire Social Security check -- which is basically our only income outside of my meager bi-weekly pay from JCPenney -- and I have lost two smaller paychecks also.

And just last week, our faithful companion and Mark's friend, our border collie Spanky, passed away. It was really sad to see her go. Even now we all comment on how quiet it is. That dog was definitely Mark's companion and he often too her for walks as exercise. Luckily my sister works at the Humane Society near here, so she is looking out for a new dog for us.

May 11, 2007

Actually now I HAVE to vent! I was supposed to get my other two larger moles removed on Monday, but I got a call (at work of all places) from the doctor's office. They have to re-schedule it because they cannot get confirmation from the stupid insurance company that it will be paid for! And they didn't want me to be repsonisbel for (in her words) a "$3000 bill".

Well, number one, when I talked to the doc about this before all the drama came up about my head, he said $350, not $3000! My other surgery and skin graft didn't even cost that much, so I think she's talking out of her butt!

#2, most doctors bill the insuarnce and then if they don't get payment they bill teh patient. What are they doing billing the insurance before the procedure takes place?

I said it before about this doc, but he is in it for the money, not for helping people. That's why he chose dermatology 'cause he knew it was a good way to get into the plastic surgery end, which is what he wants to focus on (boobs and butts). What ever happened to the hippocratic oath? Hypocrit, more likely

And I KNOW he doesn't do ALL plastic surgery cause I've seen other peolpe with skin problems in his office...

ARGH

So he wants $325 up front as a "deposit" in case they don't pay. And my surgery has been rescheduled for May 30th -- hopefully. Which is not even a week after Mark's gall bladder surgery (May 24th) and the day before I am supposed to go back to the cancer center formy check up.

Argh... its always something.

May 2, 2007

My mole removal is May 14 -- our son's birthday. I won't know until three days beforehand what time it will be. Our son has a concert that night also at school. I am sure I will still be able to attend.

May 1, 2007

I had my first follow up with Dr. Reeder yesterday. He was shocked by how much hair loss I had and decalred that they must have really fried me with the radiation. He seemed unsure if it would grow back at all. From what I've been reading, its about a 50/50 chance with radiation, depending on how much radiation you get, so I will just have to wait and see.

I am getting TWO more moles removed -- the one on my forehead and another on the calf of my left leg. With my medical history they are necessary. He said he has "very little suspicion" of any problem.

The last few weeks have been tough, but I think we may have finally found the cause of Mark's nausea. A few weeks ago he went and had an ultrasound of his gall bladder to look for stones. That came back negative, so a week or so later they scheduled another test for the function of the gall bladder itself. His gall bladder is not functioning hardly at all. So he has to have surgery to have his gall bladder taken out. We go in on May 7th to meet with the surgeon for that. Plus we finally received word back on the cardio-pulmonary test Mark had up at Ann Arbor back in March. It seems the muscles around his lungs are weak, so he will have to have pulmonary therapy to help build those up. We will not start that until after his surgery. I hope that they will be able to do the surgery laproscopically and that they will not have to cut him open which will mena a much longer recovery time. Still with my mole removals -- which will be outpatient -- Mark's surgery, our son's birthday, other commitments and a big month for "Star Wars" leaves May very very busy.

Also the people at my work are going to be walking the Relay For Life for the American Cancer Society. I will be walking with them as a survivor, since they asked me specifically.

Sunday April 8, 2007

Happy Easter!

I have a wig now. I received it from a lady at Church who also had cancer. She bought it for herself originally, but the color was too dar for her. It is almost my natural color, so it suits me just fine. I wore it to work all last week and no one really looked at me sideways, so it must look pretty good. A couple of the people I work with didn't realize the change ar first, so that's even better!

It's going on six week and I have absolutely no growth of hair in the area I lost it all in. I wonder if it will ever grow back. I don't mind the shaved look, but I will have to get a couple more wigs if I don't get any back at all.

Saturday March 17, 2007

Well, I did it. With my husband's and son's help, I cut off the rest of my hair. I am not completely bald, but have no more than 1/8" stubble all over. I may still razor that, I am not sure. Truthfully, I kind of like it. Although my head is getting cold easier and my hats feel really weird. I am also glad I did becuase I have found a couple of other moles I should get checked out. This has also made soaking my head a lot easier and definitely has made applying my ointments/creams a LOT easier. Plus some of the longer hair was starting to get stuck in the wound when I would wash it or even take my hat off and on.

Wednesday March 14, 2007

Two weeks out from my treatments and things are okay, I guess. My head is much more sore, especially around the edges. In the graft area, I am getting a lot of dryness and redness. I try to keep the cream on it and soak it, but the radiation is still doing its job. They warned me that the radiation still will be in my system for a while and they are right. It just kind of bothersome more than anything. I am getting to the point where I just want to shave off the rest of my hair to keep the cream from gooping it up so much and making it greasy and dirty. I still might do it...

Had some major vehicle problems last week. We had no working vehicle for several days. Mark took the van to Ann Arbor and it died as he was pulling back in the driveway. Drive shaft broke. The truck has been acting up for weeks. That really elevated my stress level, to say the least. I just hope they last a while yet. We definitely cannot afford to buy another vehicle right now.

I keep getting statements in from what little bit of insurace I have through work. They have paid $300 -- that's all! I am not sure what my total is, but guess ing from the statements I've seen so far, it looks like my bill is about $2500 for each week I had treatment plus other expenses. Probably more that I am not seeing yet. That's one final bill I do not want.

Friday March 2, 2007

Yes! I am done! I finished my treatments this past Wednesday. Originally it should have been Monday, but we missed a day due to snow (we had over a foot that fell that day) and this Monday the center cancelled because the machine was broken. They even awarded me a certificate of achievement.

I have been so extremely worn out however, the past 2 1/2 weeks or so. Everything has finally caught up with me, I'm afraid. But now I can just heal. They said the radiation will still be working in my body for a few weeks and that I will still be fatigued for a while, but at least now I know there is light at the end of the tunnel.

Here's a look at my head now that the treatments are over:

You can see I lost a big hunk of my hair at the extreme right of my bangs (left side of this photo). I think that is what is so discouraging... that the hair loss is not symmetrical and easy to hide. I actually would rather lose all of my hair than the weird area I did. They did say though that the skin looks excellent. I will have to go back and forth between the Cancer Center and my dermatologist for follow-ups for a long while, just to make sure that nothing else develops. But everyone seems pretty confident. I see my dermatologist on May 2nd and back to the Cancer Center May 31.

Tuesday February 13, 2007

Day 21.

Two weeks left. Well, a smidgen more than that since my treatment is cancelled for tomorrow. We're having a blizzard here right now. We're supposed to get 12"-16" of snow and the wind is 35 mph. Right now we have about 6" on top of the 4" or so that fell last week. Everything is shutting down. I went for my treatment this morning and they warned me it might get cancelled for tomorrow. I didn't even get home and they called to say they had received the official word that the clinic will be closed tomorrow. I am pretty sure they will be shutting down all the roads in the county by the end of the afternoon. Wow!

I got my hair cut real short last week. I feel better about it, but I am still losing some. I have a chunk out of the extreme right hand edee of my bangs now. Luckily I can hide that by brushing the other bangs over, but I still know its there.

Snow photos:

Friday February 2, 2007

Day 14

Wednesday January 24, 2007

What a lousy week. Not only did I start my radiation treatments and am dealing with all this abdominal pain, but Mark ended up in the hospital for weird heart rhythms and an elevated white blood count (he is home now), and our pick-up truck broke down. In addition, when Mark went to Ann Arbor for all his appointments, he was told that the medicine given to him during his three sets of chemo infusions has been linked with a potentially fatal brain virus called Progressive Multifocal Leukoencephalopathy (PML). While the odds are slim for him developing this disorder, it does give us another worry to keep in the back of our minds.  I am soooo ready for a new week (and hopefully a better week) to start.

Wednesday January 17, 2007

Day Two. I had a short check-up after my treatment today. Very short. Just enough for them to check the graft area and to answer any questions I may have. She gave me a tiny tube of Aquaphor Healing Ointment and told me to start using it. She gave me a coupon too, but it expired Dec. 31, 2006. Just my luck. I asked about the wet gauze and she said it was to help "pull" the skin up so the beam would not penetrate too deeply and also to simulate thicker skin on the scalp where skin is so thin. I guess the beam will not work right if there is not enough skin. I will be getting these check-ups weekly, along with X-Rays, but those will be done right at the radiation machine, so I won't even have to move to another room for those. No other labs are expected. One thing that surprised me is she said I needed only 30 treatments instead of the 34 I was originally told. Our son came with us today an they were nice enough to let him take a look at the machine (not while it was in use, but he did see me on the table) to ease some of his fear and curiosity.

Tuesday January 16, 2007

I had my first radiation treatment today. It was very uneventful. It took all of about 5 minutes -- no kidding. They took me in, laid me down, put a wet dressing on my head (I am not sure the purpose of that, probably just to keep the area moist, but I will try to ask tomorrow), and zapped me. There was no pain, no sound except a buzzing and not even a loud buzzing at that. However, afterwards Mark and I went to Wal-Mart before I had another appointment with my family doctor about some adbominal pain I've been having since Sunday, I could feel a sensation of warmth. Not a burning, per se, but just warmth. Now it feels a little more intense, kind of like the start of a sunburn. And as you can tell from the photo, the area is already beginning to look red already (it looks redder in person than it does in the photo.)

About my other doctor appointment, I spent some time Sunday in the Urgent Care center here in town. I was having some really sharp, stabbing pains in my upper right abdomen area. Very sharp, very intense, but would only last a second or two. Afterwards, though, the site was still very tender. I had several bouts of this pain throughout the day. I followed up with my family doctor today and he wants me to get a CT scan of my abdomen and pelvic area. He is concerned that my appendix may be inflammed. Sunday at Urgent Care, they were concerned about my gallbladder/duodenum. So Friday I get the CT done.

Thursday Mark goes up to Ann Arbor for several appointments: Pain Clinic, rheumatology, CT scan of chest. pulmonary function test, and finally pulmonology. At least its worthwhile to drive all that way for five appointments.

Wednesday January 10, 2007

Happy new year!

I had my visit with the radiation oncologist today. Everything looked healed over well and we are starting treatments this coming Tuesday, January 16 (two months to the day from my surgery). So for the next 6 1/2 weeks, everything will be on hold, pretty much. I will have treatments five days a week, for a total of 34 treatements. I will experience more hair lossaround the graft area, permanently. However, I will not lose all of it, even temporarily.

Today they took me in for a run-through. They laid me down with a small plastic cradle under my neck. The table can move up and down and even swing all the way around. It was kind of interesting as I had to lay completely still and they drew a cross-hair on a piece of film or plastic that they could lay atop my head and use as a target, more or less. That way they did not have to tattoo my head. It did not take very long, and they said the treatments themselves would only take about five minutes each -- it would take longer to get me settled in than the treatment itself.

Also Mark was concerned that the radiation would affect my brain. The oncologist assured him that the rays would not penetrate very deep. In otehr words, they would not go into my brain, or at least very deeply into my brain. Its incredible how they can pin-point things so precisely anymore.

Thursday December 21, 2006

Had my follow-up appointment with my dermatologist. It was just a short check-up to see how my graft is healing. Let me tell you, a lot of difference can happen in a week. It looks so much better than the picture I posted last week. The doctor even said it is looking good and should be completely healed in two weeks... definitely by the time I go back to the radiation clinic. I also had him check out my other moles. He said there were no worries there, thank goodness. Specifically he is looking for a large mole (the size of a pencil eraser or more) that are black, or weeping sores like I had on the top of my head. The one mole on my forehead will need to be removed (thank goodness, I hate that thing) but he does not believe it to be a malignancy at all.

I also want to extend a hearty MERRY CHRISTMAS and a Happy New Year to all! We will be pretty busy here for the next few days -- as everyone else is I'm sure! I probably won't post again until after the new year unless omethign happens.

MERRY CHRISTMAS!

Tuesday December 12. 2006

Posted a new picture on the "Graphic Medical Pictures" page of the graft now almost 4 weeks after the surgery. To me it does not look like its healing. To me it looks infected and dying. But Dr. Reeder and Dr. Zimmerman both have told me it is healing well. Dr. Zimmerman told me this last week. It is worrisome to me since to my eye it looks worse than the original cancer site did and I am afraid the cancer is preventing it from healing properly. Next Wednesday I go to see Dr. Reeder again and will make sure he looks at this. I am also planning on having him check out the plethora of other moles I have scattered over my body.

Monday December 11, 2006

Mark had his stomach 'scoped today. He is very tired right now from the effects of the anesthesia. The surgeon said he did not encounter any abnormalities at all, which is good, but still makes us wonder why he is experiencing so much nausea. It could be from all the different meds he is on. There is also a possibility of a gall bladder problem, which we will have to address with our family doctor. Maybe this new medication our family doc put his on (Cytotec) will help protect his stomach a little more and staop all these bouts of nausea.

HAPPY BIRTHDAY DAD!

Wednesday December 6, 2006

Busy busy week. Yesterday Mark and I met with the surgeon for his stomach 'scope. He will be having that done this coming Monday in St. Marys (at least we don't have to drive all the way to Michigan this time). Today we met with the radiation oncologist for close to an hour and a half, discussing treatment and the effects thereof. I am in the state of information overload at this point. She said though that the graft area looked like it was healing well BUT she will not do radiation until it was completely healed, so I have been granted a reprieve of a month to six weeks before I will get the treatments. I will have 34 treatments, once daily for five days out of the week for about 6 1/2 weeks. I was also told that I will also probably sustain even more permanent hair loss due to the intensity of the radiation she will have to use. She did mention that there are partial wigs that can actually be glued down semi-permanently though. Maybe that will be an option once this is all over. My next appt. is January 10th. At that time she will assess the graft and see if she can get things started.

I went back to work yesterday. I held up pretty well, but I was sure tired by the end of the day. I work tomorrow too, and Saturday. Friday we have our Church Christmas party. Our son gets to play Joseph. Luckily I figure he can use most of his Jedi garb to make an effective costume. 

Wednesday November 29, 2006

Mark went to the doc for his nausea and they referred him to a surgeon so they can 'scope out his stomach. He goes next Tuesday. With all the meds he is on, he is really high risk for bleeding ulcers. At least they are looking into it now. Today he is at the dentist. He will probably have to have a tooth pulled -- maybe more than one. But with his medical history he will probably have to go to an oral surgeon which will cost who knows how much. <sigh> I really need him as well as he can be before all this comes down with me

I am still waiting to hear back from the radiation clinic about an appointment. I am going to call them this afternoona nd make sure they got all my information.

Monday November 27, 2006

We received bad news today. The cancer is down into my skull, which means at the very least radiation therapy. It could also mean another surgery, this time where he would cut into my skull to remove the cancer. However, since my current skin graft is basically right on top of my skull without any "meat" in between the skin and the skull, Dr. Reeder will be unable to do another graft there. What he said he would have to do is take a flap of skin and flesh from another part of my skull and transplant it onto that spot, then do another graft from my other leg to cover where he takes the scalp one. Ouch. This time I will definitely be in the hospital, as general anesthetic will be needed. Also the type of cancer is specific subtype of basal cell carcinoma called the morpheaform type. This subtype typically appears as a scar-like, firm plaque. Because of indistinct clinical tumor margins, the morpheaform type is difficult to treat adequately with traditional treatments. (Okay so I stole that from a medical website...)

So right now I am waiting for the radiation clinic to call me back with a consult. Hopefully they will get everything set up quickly and they will be able to take care of everything and a second surgery won't be needed.

On another note, Mark has been ill all weekend. He is at our family doctor right now. I wish they would stop treating the symptom and find out what's making him so nauseous in the first place!

The good news right now is that Dr. Reeder said I am able to take a bath and wash my hair after Thursday, albeit gently! Hooray! I am also getting around fairly decently, all things considered. I still have pain and I wouldn't want to be on my feet all day, but I do feel like its healing. I return to work next week, December 5. I should be able to make it through the Christmas rush decently, I hope.

Saturday November 25, 2006

Mark gave me a big scare yesterday. First he slept until 1:00 in the afternoon -- which he NEVER does. Usually he doesn't sleep at all. That did not bother me though (I figured he needed the rest) until later that night when he started throwing up again. Violently. With my leg, there wasn't much I could do for him. Our son was upset. He said to me, "I don't need both of you sick!" Poor kid. He's had to put up a lot with us, especially lately. Right now Mark seems to be doing okay, although he said his stomach is still upset. As long as he doesn't throw up anymore, I think he'll be okay. But still, that's like the third bout of severe nausea he's had in like two months. We need to get him checked out.

It was a gorgeous day yesterday. Before he got sick, Mark took me to Wal-Mart and stuck me in a wheelchair. It was nice to get out, although kind of uncomfortable. I think the car ride was worse. I need to stretch out the leg to relieve the pain and I couldn't do that in the van. Still it was nice to get out for a bit, although I feel horribly grimy. Today I feel better than I did Thursday, that's for sure. Thursday was a very bad day. Leg is still very painful, but if I bend it just right or stretch it out, its tolerable. Still, I am not spending a lot of time on the computer.

Thursday November 23, 2006

I am doing okay. Stayed at home today. We usually go to my sister's house, but I am just in too much pain. Feeling a little better now that I took a pain pill and about a 3-hour nap (vicodin just knocks me out -- and turkey enzymes didn't help either). We had some wonderful people in our church bring over a WHOLE 13-pound roast turkey and mashed potatoes and all the fixins yesterday! Wow! I can't believe it! That was a LOT of work, but the guy said he likes to cook.

Hope you had a great Thanksgiving!

Tuesday November 21, 2006

I am in pain. Although not as much as last night. I worked for over an hour-and-a-half removing the bandage off of my thigh. OMG! I have never felt pain like that not associated with childbirth! It is slightly better today, but I had to take two of my pain pills so I could sleep last night (I have only been taking maybe one a day up to this point). It is red, rectangular (funny how they can be so precise!) and very very raw! It is approximaetly 3" x 4".

Mark today is in Lima getting his last infusion this time around. I feel bad that I have not been able to go with him to any of the infusions this time.

Also I realized that it is almost EXACTLY 10 years ago that Mark was diagnosed with WG.  I hope this isn't something we have to experience every 10 years...

I have added a couple of new pages to this website. One is a guestbook, so please feel free to leave comments. The other is Graphic Medical Images where I have posted the more graphic photos of my surgery. This includes the original site with the basal cell carcinoma, yesterday's skin graft area on top of the head (which Mark says looks a lot better today) and a purposely blurred photo of the skin graft area of my leg. Please be aware these are gross-looking medical photos.

Monday November 20, 2006

Went to the doctor today. He took off the big conehead bandage, which I did not expect since it has only been about 4 days. Took the staples out too. Now my hair is mostly still there, but it is a big matted mess. He rubber-banded some of it to keep it out of the wound area so that makes it look even worse. I cannot wash my hair for anotehr 2 weeks. Ick. The graft itself is bigger than I had thought. And pretty gross looking. I will not post a picture of that yet. I will post a picture of my matted hair with a small bandage covering it. No hair will grow back there. But the stylists at Penney's slon told me they would help me work on a look to cover it. I am also allowed to take the bandage off my leg, but he didn't do it. Its up to me to get that one off.

I still do not know about radiation. I will to know until next week when he comes back to Celina and he has the tissue samples back. But the doctor is optimistic, as am I (which is unusual for me.)

Saturday November 18, 2006

Today I woke up and my eye was completely swollen shut. Luckily for me it was my left eye, or I couldn't see at all (I have an artifical left eye due to cancer at age of 10 months old). I thought for sure I would have to go into the Urgent Care or ER, but we called Dr. Reeder and he is pretty certain it is swelling from the surgery itself. He called in a prescription for some steroids and if that doesn't work by tomorrow then I will have to go into the ER. So let's hope it works. My forehead feels puffy and definitely around my eyes. Lips feel a little puffy but not bad.

Friday November 17, 2006

Ugh. I don't feel the greatest, that's for sure. And the leg where the took the skin off for the graft hurts a lot more than my head does.

So we drove down to Dayton and got stuck in traffic by a really bad car accident less than five miles away from the clinic. We ended up being 5 minutes late, amazingly. I had called ahead to let them know we were being held up in traffic. The clinic itself was very nice. It is really used more for plastic surgery than for the type of operation I had, so they try to make it nice and comfortable for its clientle, Very fancy. Even the room where I changed into my gown was nicely accented with scarf valances and real drapes that coordinated with the wallpaper and had real furniture, not that vinyl-coated stuff you usually find in hospitals. I made sure they knew about my allergy to adhesive tape, so I got a nice big red wristband that listed it in bold letters. The consent was on a computer with a clipboard device I signed whcih transferred my signature right onto the computer screen.

Mark came back with me and helped me change into my gown. They even gave a nice white fluffy robe to cover up with. Then they took me down to the prep area. Everyone was very nice. The guy who did the IV couldn't get it started in my left arm and it kind of hurt as he gouged around for a vein, but the right arm was much better. Of course they asked all the standard medical history questions. Dr. Reeder came in very briefly and said Hi and explained in about 10 wrds what was going to happen. He didn't say much, just that they were excavating my scalp and taking a graft off my leg, which I already knew. He was gone before I could ask him about how much hair I would lose or how long the surgery would be. The nurses in the prep area didn't seem to knw the answers to those questions. Then before I knew it, Mark "gave me some sugar" (as the nurse said) and I was being wheeled into surgery.

Of course I don't remember the surgery. I remember the OR was very brightly painted in a nice tropical blue and the wallpaper made it seem like a tropical scene (life size plam trees and beaches). Again they were trying to make you feel comfortable. I was in the OR at 12:12 p.m. The anesthesiologist administered the drug through the IV and soon I was feeling very tired. The last thing I remember is everyone staring at me.

Then I was awake. I couldn't hardly move my head due to the weight. It felt like the bandage stuck up about four inches. I was transferred back onto a gurney and wheeled down to the recovery room. The same nurse who prepped me was the me who took over afterwards. Mark came back and sighed. The clock in the recoevry room said about 1:15, I think. The surgery took a lot less time than I had anticipated. Slowly I started waking up. Mark said the waiting area he was in during my surgery had also been real plush and had a big screen Tv in it. I drank a little bit of Pepsi and slowly starting feeling a bit better, although woozy. At about 1:35 the nurse helped me get dressed and we were out of the building around 1:45. Wow. That was fast!

The first thing I did in the car was open the vanity mirror to look at my bandage. Yep, it stuck up alright. I am sure you all want to see pictures, so here it is:

As you can see, at least they saved my Star Wars Padawan Braid. I have no idea how much hair they cut off teh top of my head and I won't know that for a while yet. I have a follow-up on Monday with Dr. Reeder in Sidney (about 45 minutes away), so I hope he changes the dressing so I can see. The back of my head is a little uncomfortable too where some hair is tsuck up inside my bandage at a weird angle.

Something I didn't expect is how hard it is to talk and eat with this bandage. Last night my jaw was really aching because of the pressure. Also its hard to keep my eyes open just because of the pressure.

I also have a huge bandage wrapped around my upper right thigh where they took off the skin for the graft. I won't take a picture of that know because it is kind of blood stained. But if Dr. Reeder changes it on Monday, I'll try to take a picture of the new clean dressing.

I have no idea how many stitches I have or how much hair loss there is.  I also don't know for certain if I will need radiation yet or not. I hope I will find out on Monday after he gets some labs results back from the tissue samples. At this point I am optimistic that radiation will not be needed.

Comments can be sent to    sendusaquarter@yahoo.com

Tuesday November 14, 2006

Less than 48 hours until my surgery. I am quite nervous. I did some research on the web and came across the blog of an older gentleman who had the same type of surgery but for a different type of cancer. The pictures scared the crap out of me. But now I think I am getting used to the idea of a huge bandage wrapped all around my head to keep it in place. I just hope and pray that I do not have to go through radiation. The man in the blog did and his graft did not heal well at all.

Surgery is at 1:00 p.m. on Thursday. We have to be there at noon. I will update when I feel back up to coming on here.

Friday November 10, 2006

Surgery is now set for Thursday November 16th.

I have uploaded a photo of my head to this site. You can view it by clicking the Graphic Medical Images link on the left toolbar. 

Monday November 6, 2006

CORRECTION in Lima News article: I would like to point out that we do not have Medicaid, which is state-assisted. Mark has Medicare, which he gets through the federal government due to his disability. We do not qualify for state-assisted Medicaid since we are above poverty level. I do not receive any health insurance benefits at all through Mark's Medicare. Our son receives Healthy Kids through the State of Ohio. Also we do receive a grant from the federal government whihc pays for the deduction for Mark's Medicare Part D (prescription coverage)

On a  side note, Mark did go for his infusion today.

Friday November 3, 2006

Mark was supposed to go in today for his second infusion in this round. However he was up all night vomiting again, so we did not go. We went to our family doc and they gave him a shot for the nausea. At the moment he is doing a tad better. We re-scheduled for Monday depending on how he feels. But I have to work Monday so he will have to go on his own.

Thursday November 2, 2006

I know its not a type of cancer known to be fatal or one that metastasize too much. The big problem is tissue damage. And since its already so big, the doc is worried that it may be to the bone or damaged the bone. Its not a mole, its a big gaping open wound right on the top of my head that will not heal. I grossed out the doc when he first looked at it. I am not extremely worried about survivability, I am worried about complications that may make me have to have radiation,  the side effects of radiation, and of course cost. Even without radiation I will still probably lose most of my hair due to the location of the wound.

And I just kick myself for not getting it looked at sooner. The possibility of cancer had not seemed like a concern. I figured due to the location of the wound, it would have a hard time healing. Every time I washed my hair or brushed my hair it would open back up. Plus I was always picking hair out of it. Had I even thoguht about cancer, I would have gotten it checked out sooner.

 I have checked out a couple of cancer centers that say they do things for free if you can prove you need it (which I think we would). Can you believe they said they don't deal with my cancer because its not one that is considered high-risk in most cases (less than 1/2 of 1% fatality rate). See I can’t do anything right! I can’t even get the right type of cancer! LOL.

Tuesday October 31, 2006

Someone's trying to make me not like Halloween anymore. Last year Dad had his surgery on this day and this year I was diagnosed with basal cell carcinoma skin cancer. While not exactly a fatal type of cancer, I do need surgery and a skin graft to prevent even more tissue damage. I have a large-ish (5.5 cm) lesion on the top of my head. I may need radiation therapy also if the lesion goes to the bone as he suspects. I may also have to go to a university hospital also the lesion goes too deep as Dr. Reeder will not cut into the bone (skull). And since I do not have insurance, the doctor (Dr. Christopher Reeder out of Dayton/Circleville) needs payment up front. His fee alone is $1500. He is pretty sure he can find a clinic in Dayton that will allow him to use the facilities at a decent price, probably around $1000. I will know more about fees tomorrow when his billing agent gets back with me.  

Monday October 30, 2006

Last week just seemed like one of those oppressive weeks that just really suck the life right out of you. My boss and Bev in the Home Dept. at work were both on vacation, so we were short-handed there. We had to take our son to Urgent Care with 103.3 degree fever. His illness kept him home from school for three days and kept me home from Mark's first chemo treatment. He even missed trick-or-treat. I even left work early one day to help out with everything. The van was in the shop all week, leaving us with one vehicle. And my dermatologist's office called to re-schedule my appt. (which was supposed to be today) because the doctor had a death in the family. I now have to drive over an hour down to Tipp City (by Dayton) or wait another 2-3 weeks before he comes back to Celina. I opted for Tipp City tomorrow so I can finally find out. I have not been sleeping well since I had the biopsy. I want to find out what's going on! 

Monday October 23, 2006

Mark will be starting his chemo treatmenets (Rituxan) within a week or so. Tests have come back saying that the disease is progressing, but maybe not as quickly as it once was. So while this is encouraging, his x-rays and labs still show a huge lesion on one lung. I will see if I can get a photo to post here. The doctors have upped one of his current medications (Cellcept) and want to do the Rituxan again, at a slightly stronger dosage. They want him to continue the Rituxan at six-month intervals.

Also today our van fell apart, so we are stuck with one vehicle again.

On a scary note concerning me, I had to have a biopsy done on a sore on the very top of my head. I have had it for a while and it just does not heal. I attributed it to the location -- whenever I brush or wash my hair it opens back up and I am constantly picking hair out of it. The dermatologist took one look at it and said 'If that's not a malignancy, then I don't know what it is.' I have to wait until next Monday to get the results. <sigh>

A few weeks ago Mark had to spend the night at the hospital in St. Marys. He had been naseated all week and was vomiting 8-10 times a day. They at least got some fluids into him, but never did find out the whole cause.

Saturday August 19, 2006

It's been a while since I updated. The docs at U of Mich. are concerned because he is just not doing well. Not horrible, but not as well as he should after two rounds of Rituxan. Plus its been nearly 10 years and he has never been in remission. It's going to be an expensive trip. We will have to rent a car since our poor old van would not take too well to the hills down there.  

Sunday June 25, 2006

Some more decent news. Number one, we found out that the local hospital where we had the last round of Rituxan treatments charges a lot less than Univ. of Mich. for the treatments. Also we found out that it looks like Medicare is going to pick up 80% of the cost. That is good, since as I mentioned before, they were under no obligation to do so since Rituxan is not "labelled" for use with Mark's disease (very few things are, and what is has not been effective with Mark's case.) While this is still a good chunk of money we will owe, it is nowhere near the amount we would owe Univ. of Mich. (which we still do owe for the first round).

On not so good a note, we are now looking for a good dentist in the area that will allow us to pay over time. Mark's teeth are horrible, due to the amount of Prednisone he has had over the years (Prednisone can cause osteoporosis -- which Mark has the beginnings of -- and can soften teeth also). Mark's teeth have been bad for a while, but he was able to control the pain with the medications he has. Now, however, the pain is getting too intense.

Wednesday June 21, 2006

We have been overwhelmed the past few days with gratitude for a lot of people. Some of my friends in the "Star Wars" community have started a eBay auction to help our cause. Unfortunately, this led to a problem.

"Yodasnews.com just listed this ebay auction for an Acme Archives Clone Wars ARC Captain Character Key and we will be  donating the money from this sale, including the cost of the item, to a member of our online family.

Forum member Carol Gilbert, aka JediMom, and her husband, Mark, are facing a tremendous amount of debt from medical bills. Mark suffers from a condition known as Wegener's Granulomatosis, a rare autoimmune disease. The final cost of this auction, less the associated eBay and PayPal fees and cost of shipping, will be a small step toward helping the Gilbert family overcome these seemingly insurmountable circumstances. Please check out the auction right here for more information!

Update 6-21-2006: Well, it appears not everyone out there has a good heart, as our auction was recently pulled because eBay received several messages from members that felt the need to file reports with the site. The way the auction was worded was apparently against eBay policy, and the link to http://www.wgassociation.org/ , which is just information about his horrible disease, was also deemed to be a violation. I also want our readers to know that it was not eBay that initiated this, but someone who saw the auction and wanted it removed. The reason for this is beyond my comprehension, since its sole intention was to help a longtime member of the Star Wars community get some much needed financial assistance. We are currently debating if we will re-list with new wording and no links, or if we will take the auction elsewhere, but for the 15 bidders it had, please check back here later tonight or tomorrow, and please bid again! We will not allow some cold-hearted people stop us from helping a woman and her family in a time of need. There are plenty of good, generous people in this world, and good will prevail. We would also like to send a big Thank You to Sandtroopers.com, DeathStarPlans2.com, Razorsedgecollectibles.com, and AzogsCollection.com for posting about our auction and helping get to over $127 and 500 views in one day!"

The auction has now been relisted.

Tuesday June 20, 2006

Mark passed another kidney stone last night. It has actually been a while since he's had any. He kind of felt Sunday that he might be having one since he had pain in his lower back -- typical of kidney stones. However, this one was not typical as it felt more like a bruise than an actual sharp pain. Along with his WG, Mark has a condition called Medullary Sponge Kidney which is a rare disorder characterized by the formation of cystic malformations in the collecting ducts and the tubular structures within the kidneys (tubules) that collect urine. One or both kidneys may be affected. The initial symptoms of this disorder may include blood in the urine (hematuria), calcium stone formation in the kidneys (nephrolithiasis) or infection. The exact cause of Medullary Sponge Kidney is not known. Since it has been so long since he had a stone, we were kind of hoping maybe it was correcting itself. For a while he was having stones pretty much daily. Whether this is part of his WG or otherwise is not known, but since WG can affect the kidneys I am always wondering.

Saturday June 17, 2006

It's been three months now that Mark has ha his last round of Rituxan. I am disappointed. Last year, three months after his first round of Rituxan, the difference was so pronounced that you could actually tell he was feeling better. He looked better. He had a shine in his eyes. This year its almost the opposite. He's been complaining of lung pain all the way through to his back, making us wonder if the nodules are getting bigger and deeper again. He is not even responding well to his puffers -- Flovent, Albuterol and Serevent. Sunday May 28, 2006

Mark is sick today. One of the hard things to do is differentiate between what is a cold or flu and what is a genuine symptom of WG flaring up. Right now I am pretty sure this is justa cold, since I have exhibited some of the same symptoms this past week and still have a sore throat. However, with Mark we must be careful that it doesn't go into something else...

Also today our van is dead. At first I thought it was something really serious, but once Mark came out to take a look I realized it was just the battery. I hope it will hold a jump later today. I'd hate to have to go buy a new battery.

Saturday May 27, 2006

We went to pick up some prescriptions for Mark today, only to find out that for some reason Mark's Medicare Part D (prescription coverage) had not covered the medications! I was worried that we had reached our limit already. Although we do not have to pay any fees or co-pays for the coverage -- due to our low income -- we still have a limit on how much we can spend. And that amount is pitifully low when you're looking at several hundred dollars for one prescription. The staff at the pharmacy tried running the pills through again, only to have them kicked back. As soon as we got home, I called the Medicare prescription plan to try to figure out what had happened. Of all the stupid things, Social Security had the wrong birthdate down for Mark! Yeesh! Now we have to go stand in line at the Social Security Administration office to get something fixed that shouldn't have been messed up in the first place! But at least our prescriptions are covered -- for now.  

 Thursday May 25, 2006

What a day. Mark was feeling decent so we went to our son's Field Day at school to cheer him on. However, Mark left the keys in the ignition and we had to call a locksmith to unlock the van. Another $45 down the tube. I swear it is always something! He has short-term memory loss form the Prednisone and from the lack of sleep. but this was just a mistake. I've done it enough times, that's for sure. When I was pregnant, I was locking myself out of the car twice a week at least!