Wednesday, July 8, 2009

The good news is that there is nothing wrong internally that is of concern.  The bad news is I still have this unexplainable pain.  I'm going to try Naproxen for the discomfort and I may even try an over the counter sleeper.  Night time is definately the maybe I'd feel a lot better with a good nights sleep.

Drove today for the first was a bit uncomfortable, but I managed and didn't have to go more than about 5 miles or so.

Took the kids to the grocery store, who were amazingly helpful.  They pushed the cart and loaded to groceries up at the checkout.  Jess loaded them into the car and they helped carry them up the basement stairs, unpack them, and put them away.

I managed to sneak in a nap for an hour, which was good...and not uncomfortable :)

All in all a pretty good day!

Tuesday, July 7, 2009

It has been awhile since I've updated and figured it was time to sit down and get it done!

The recovery has gone a bit slower than I had hoped, as I am still continuing to have pain at this point...we are almost at 3 weeks post surgery. I saw the surgeon last week for my followup and he felt that things were looking good. The preliminary pathology reports look good as well.

But another week has gone by and I still have this very strange pain in the middle of my belly. The incisions have healed well and the larger of the three is still a little tender to a bruised feeling, so...we just don't touch it! This other pain is in the center of my abdomen below and to the left of my belly button. I get sharp, stabbing pains when I take in a deep breath, bend over, after I do any extensive walking, and after I eat. I have a constant feeling of being full, like you get when you overeat, and even after a small meal, I am in a lot of pain. By the end of the day I am "done" and the pain makes it very hard to relax and sleep comfortably. The surgeon has not given me any more pain meds at this time and over the counter stuff just doesn't help at all.

In addition, my blood pressure has remained elevated at times...especially when the pain is more severe. So, I am still taking meds to control my bp until I am pain free. Fortunately there aren't any negative side effects from this bp med I'm on now.

So...all that being said, we are headed back to Boston this afternoon for a CT scan and another appt with the surgeon. I hope that they find a cause for this weird pain...not that I want there to be a complication...more of a simple explanation. I hate the thought of walking away with the surgeon throwing his hands up in the air.

Other than that...I am just trying to get my head in gear to readjust to a "normal" life. Things have been so "off" for so long that it is hard to readjust again. But I am ready for my independence and ready to "give" again!

The kids have done really well through all of this. Dan spent a week at camp at the end of June and had a ball. Today he started his extended school year program. He will go to a Vet Farm camp in August, and is still taking bass clarinet lessons. He is really growing up!

Jess leaves on Saturday for three weeks. I am really going to miss her! She will be in Tennessee for a week with her church youth group at a big retreat called CHIC (Covenant High Schoolers in Christ)...from there she heads to the Univ. of NH for two weeks of music camp!

Jake is getting anxious to start his camps, which aren't until mid July. In the meantime he is playing in a summer basketball league and taking piano lessons.

Rob and I are trying to get back in sync and plan a vacation for early August. He is busy with work as usual.

I am hoping to be back at work in late Aug/early Sept. depending on what jobs are available.

We feel so blessed to have had my sisters here over the past few weeks to help take care of me, the kids, the house, and the crazy animals. My mood has been less than pleasant during this time, but it is just because I am so tired and frustrated...and anxious to just "move on." All this in God's time...I know!

Monday, June 22, 2009


Hi, This is Wendy's sis Terry again. Wendy got home today and is now resting comfortably (sort of) in her own bed. Hopefully being home will help recovery go even more quickly now. She's very sleepy and sore, but we're all just so glad she's back! 

Friday, June 19, 2009

Wendy's surgery went great!

Hi everyone, This is Wendy's sister Terry filling in today.

Wendy's surgery got started a little late yesterday and she was finished after about 3 hours and all went well. They were able to use laprascopic surgery for the entire procedure, which is good news - recovery will be easier because of that! The risks with this surgery involved fluctuating bp and heart rate as the tumor was removed, and thankfully that was all held under control. She is safe! After surgery her vitals have been "rock solid" steady, as Rob described to me. Of course she is in some pain and very groggy and hoarse - all to be expected. What a relief. We are all so grateful to everyone for their prayers, love, support, meals, etc! 

She was expected to stay in ICU for the night, but since she was doing so well, there was some discussion of putting her in a regular room sooner. I will update again later when there is more news!

Wednesday, June 17, 2009

It is hard to believe that after all this time, the big day is finally almost here.  These past two weeks on the new meds were not as bad as I thought.  They did make me tired and dizzy, but nothing that was unbearable!  

Now I am heading off to bed.  We have to be at the hospital tomorrow at 12 noon...the surgery is at 2pm and will take 3-4 hours.  I am scared and nervous, but I am ready to get on with life and finally release the "hold" button!

My sister will be updating my blog on my status.

Friday, June 5, 2009

We went to Boston this past Tuesday for my pre op appt.  It wasn't exactly what I had in mind, but I think I am okay with it all.  They took a bunch of blood, did an EKG, physical, and history.  I met with a NP (nurse practitioner) from anesthesia, a nurse from the surgery dept, and a very short discussion with an anesthesiologist.  Everything looks good and we are now counting down the days! I will spend at least one night in ICU...I am not looking forward to that!  I will be glad to get moved to a regular floor, and hopefully into a private room so that my nursing instincts will not be tempted.

Yesterday I started the new does make me pretty sleepy and so far I am not too dizzy...just feel like I am walking around on a sailboat that's tipped up on one side.

We are wrapping things up at school with the kids...they finish on June 23rd.  There is lots happening with them between baseball, softball, band, scouts, and recitals!  We enjoyed our Memorial Day camping trip, but sadly I did not take any pictures!

My sister Terry will be here the eve of the 16th and we will get her settled in to take over the household before my surgery. It's hard to believe that after all this time, the surgery is finally in sight!

Tuesday, May 19, 2009

The testing went well, and the results were what we hoped for.  The lesions on the right side do not appear to be pheochromocytomas!  They think that they are neurofibromas, benign. The surgeon and endocrinologist have been reviewing my case and films with doctors from all over the country and they all seem to agree!  So, we are back to a minimally invasive surgery scheduled for June 18th.  My pre-op appt is June 2nd, and my medications for surgery will be switched on June 9th.

In the meantime, Jess is finishing up her softball season, and Jake is enjoying baseball.  Danny is enjoying his intamural flag football.

We are gearing up for our annual camping trip over Memorial Day weekend and are glad thag we are able to make the trip!

Tuesday, May 5, 2009

I have been doing well these past two weeks the switch in meds.  My blood pressure and heart rate are stable and I actually have more energy on the Inderal than I did on the Labatolol.  Today I had the injection for the test and tomorrow and Thursday will go back for the scans.  They are full body scans and will take 60-90 minutes each day.  It is possible that I will have to go back on Friday for more pictures.  Otherwise we are hanging in there and just waiting to move forward!  We had a great Spring Break...just stayed homebound and went to some local baseball games!  Jess had a lot going on with softball and spent a lot of time with friends as well.  Jake and Dan both got to see friends over the break as well.  Did a little shopping for the boys as well!

Monday, April 20, 2009

After 4 or 5 days of feeling really well, and good news regarding the test in that I don't have to go to Boston to have it has brought some more not so good news.  It turns out that one of the meds that I am on is contraindicated for this scan.  The doctor doesn't want me off the medication and is now trying to determine what other medication he could potentially put me on instead.  I will have to wait for the medication to completely be out of my system before we can proceed with the testing!  We are extremely frustrated with all of this and are becoming more and more concerned about the amount of time that has passed and the continued waiting we are dealing with for the surgery.  This waiting game is taking it's toll...I am trying my best to be patient and trusting in the Lord...I know that this is his timing...I just don't understand why we keep hitting so many bumps in the road!

Tuesday, April 14, 2009

Yesterday I received a call from the surgeon regarding the MRI I had last Wednesday.  It seems that this test showed a second lesion on the right side...this one in the abdominal area.  The test was not conclusive enough to say that these lesions were pheos.  They could possibly be neurofibromas which are typically benign tumors associated with Neurofibromatosis.  Typically they grow on or under the surface of the skin, but sometimes develop internally.  I will have to have another test done to determine whether or not these are pheos.  There is a nuclear scan called a MIBG that specifically diagnosis pheos.  I am now waiting to hear when this test will be done.  If these lesions turn out not to be pheo, then we must decide how to proceed with them...leave them alone or take them out and analyze them.

On a fun note, we spent part of the weekend with Rob's cousin.  We took a drive up to the mountains and showed him that part of this beautiful state.  It was a fun day.  

Jess had her first softball game Monday afternoon...unfortunately they did not win!  She still had fun anyway.

Jake is working on his Pinewood Derby car for cub scouts.  Weigh ins are this week and the race is Saturday.

Danny is working on a bass clarinet solo for his school's talent show!

Wednesday, April 8, 2009

Today we head to Boston for my MRI of the lesion below my right kidney.  I did have the opportunity to review the original films with my endocrinologist.  We are both amazed that the radiologist missed it...although understandable to some extinct, given he was really just focusing on the adrenals.  He told me that if this lesion is highly suspicious for a pheo, that we will have to scan from the neck down to the bladder area to look for more.  Rob and I are starting to think that this is probably a good idea to do anyway prior to surgery.  If there is something somewhere that we don't know about that could possibly be knicked during surgery, that would not be good. These tumors (pheos) can also form in the neck, bladder, and around the areas of the heart.  They will be inserting lines and catheters into those areas during surgery, so it makes sense to know if there is something there before they go poking around!!

So I continue to keep my eyes on God through all of this and let Him take hold of me and carry me through this!

Thank you all for your continued thoughts, prayers, and support!!!

Saturday, April 4, 2009

Was up last night at 4 much on my mind!!!!!!

On a fun note, Jess is loving softball at the school.   The practices are intense, but she is having a ball.  They got there uniforms and she is extremely excited about that!  Can't wait for her games to start soon!!!

Danny took a leveled reading test this week and read at grade level with 98% accurracy and good speed!  Comprehension is still a struggle, but the school is working hard with him on that.  He wants to play his bass clarinet in the student talent show in two my good friend Dan would say...Yikes!!!

Jake is spending the day outside at the local Boy Scout Camp for "Chuckwagon."  An annual team competition that tests their knowledge and skills.  The teams consisit of boys from all different age groups.  It is wet an muddy but should be a fun day!!

I'm going to get some exercise...yeah...very light and very limited, but's better than nothing!!!

Friday, April 3, 2009

This afternoon the surgeon called to talk to me about the films I had brought with me to my appt.  He had the radiologist at Beth Israel review them and it turns out there is a 3 cm lesion below my right kidney.  The pheo is in my left adrenal gland.  He wants me to have another MRI at Beth Israel to take a closer look at this lesion.  It just so happens it was on the "scout film" of the MRI that showed the pheo, but apparantly was missed by the radiologist here in town.  We are very thankful that we chose to go to Boston at this point and that this was found before I went in for surgery!  Sadly the surgeon said that it is something that will most likely need to be removed.  That being said, I am no longer a candidate for laprascopic surgery and will have to have open surgery instead.  This means a longer surgery, longer hospital stay, and longer recovery.  Don't know if the date of surgery will be moved up because of this...time will tell.  Oh and I forgot to mention that not only does May 21 mess up our camping plans, but our anniversary (17 years) is May 23rd!
Discouraging news today from the surgeon.  They have given us a tentative date of May 21st.  This is much later than we had hoped.  After speaking with the surgeon on Tues., he gave us the impression that he wanted a certain anesthesiologist in on my case if she were available.  The feeling I got from the admin at the office was quite guarantees, highly unlikely, but we can request.  This will obviously warrant a conversation with the surgeon once again.  I will be going down to meet with the anesthesiologist prior to surgery and am waiting to here when that appt will be.  There is always the chance the surgery could be sooner, but ????  I left a message with my Endocrinologist to let hime know as well.  This was very discouraging...not only is the date a long time from now, but it interferes with my sister coming to nephew graduates from high school on June 4, and he is Valedictorian of his class, as well as our big "kick off" camping trip was scheduled for Memorial Day Weekend.  Even if they move the surgery up a week, I'm not sure I will be up to the trip, as they will have switched my meds by then and I could be feeing pretty lousy.  Pushing out past the holiday weekend isn't really an option either for the same reasons.

Tuesday, March 31, 2009

Today we went to Boston to meet with Dr Hasselgren at Beth Israel Hospital.  He was very nice and very thorough.  He answered all our questions and was very reassuring!  Adrenal surgeries are very rare in general...out of the 450 endocrine related surgeries he does per year...15-20 are adrenalectomies.  Of those 15-20, only 2-3 are pheochromocytoma.  Those are good numbers based on our research, even though these numbers are small.

He has a specific team of doctors he works with on these cases and is very familiar with the special needs of preparing for this type of tumor removal!

If all goes well I will be in the hopital for 3-4 days  I will either remain in the recovery room or go to ICU overnight.

Monday, March 30, 2009

Jess made the JV softball team...go Jess.  Our spring is going to be very very busy!!!

Tomorrow we head to Boston to see the surgeon and will hopefully have a timeframe if not an actual date set for the surgery.  The past few days have been good ones.  I have been up around more like myself...but still get very tired!  My sister Melissa was here for a long weekend.  It was great to have here...we went shopping and got my nails done...she wouldn't get hers time!  She helped out a ton around the house too!   She will be back when I have my surgery to take care of the kids for us.  Rob will stay in Boston.  Fortunately his dad's cousin lives 2 miles from the hospital!  Very convenient!  

Tuesday, March 24, 2009

What else happens at the Graff house?  We have a lot happening around here right now.  Jess our 14 year old daughter is trying out for her high school softball team.  She has been playing on the rec league for a few years and is very excited about the possibility of playing for the high school.  The tryouts have been much more intense than she expected but she is hanging tough and pushing through.  She also plays the flute and is preparing for an audition for summer music camp as well as a piece she will play along with for  the high school choir at church.  She is doing great at school and we are so proud of her.  She is a very hard worker, but she is still a teenager!
She is very proud of the fact that she is 3 inches taller than her mother :)

"I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn their darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them."  Isaiah 42:16

Sunday, March 22, 2009

I have been having difficulty sleeping at night.  Last night was my first good night's sleep in several days...6 hours uninterrupted.  I felt good enough this morning to get up and help get the kids ready for church.  My energy level is extremely low, so this was a big deal...especially for the kids!  This evening we will be headed out for my son's Cub Scout Awards Ceremony.  I am conserving my energy today for him!

We have also decided that I will not be staying in Manchester for the surgery.  We will be meeting with a surgeon down in Boston on the 31st, if not sooner.  He specializes in Endocrine Surgery...he is the director of that dept. and he is also a researcher and professor at Harvard Med School!  My endocrinologist did not even blind an eye at our request to go to Boston and immediately suggested this particular surgeon.

Saturday, March 21, 2009

After being admitted to the hospital, I was being aggressively treated for high blood pressure.  After being placed on a cardiac monitor, my heart rate was found to be elevated slightly at rest.  However, as soon as I got up from the bed my heart rate shot up from the 90-100 range to the 140-150 range.  On Wed, the morning after being admitted, the doctor came in to see me.  He ordered a lot of tests, medication, and had a neurologist come to see me as well...a different neurologist :)
I was in the hospital from March 10th to the 16th.  The critical tests that were done required a 24 hour collection period and were send out tests to the Mayo Clinic in MN.  During this time my heartrate continued to fluctuate as did my blood pressure.  During this time an endocrinologist was also sent to see me.  He talked to us in great deal about this pheochromocytoma, a rare type of tumor that forms in the adrenal gland.  The adrenal gland is responsible for regulating blood pressure and it secretes the hormones epinephrine and norepinephrine.  He was quite certain that this was what we were dealing with based on my medical history and symptoms. I had been experiencing anxiety and feelings of depression for about 6 months, tremors (shaky hands),sweats (hot flashes), headaches, and borderline hypertension.  I also have a genetic condition called Neurofibromatosis Type 1 (NF), a predisposing condition to pheo, as well as I had also had two surgeries in the past 6 months...anesthesia can trigger a pheo to react.  

The test results came back positive (normal ranges were below 500, mine were over 6000) and an MRA of the abdomen was ordered to find the location of the tumor.  The tumor was found to be in the left adrenal gland.

I met briefly with a surgeon before discharge on Mon night, as surgery is the only treatment for this type of tumor.
90% are benign with an increased chance of being benign because of the NF.  I was started on medications called Cardura and Labatelol for blood pressure and heart rate control.  I will continue on these meds until surgery.  They will switch me from Cardura to a more potent drug  specific for pheo about 2 weeks prior to surgery.  I am monitoring my blood pressure multiple times a day.  The meds make me feel very tired and weak.  My activity is restricted so as not to stress my job is to "take it easy, and rest."  My doctor is gradually increasing the Cardura (BP med)...I started with 1mg/day and am now up to 5mg/day in divided doses.

This all began on Tuesday, March 3rd. We had just returned from an amazing 10 day vacation in Florida on Sat. night. Tues morning I was getting ready to head out to an appt and Rob was on his way to the airport to catch a flight to Kansas City. As I was shutting down my computer to headout, I had an acute onset of an extremely painful headache, one like I have never experienced. As a migraine sufferer I know headaches, and this was no migraine. My vision was blurry, I was disoriented, short of breath, and vomiting. My head felt as if someone had placed it in a vice grip and was constantly turning it while someone else was whacking me with a 2 x 4. It was the most painful experience I have ever had. I managed to get to a phone and called Rob. He called 911 and came immediately back home. He had been gone barely 10 minutes when this started. My blood pressure was elevated when the paramedics arrived. They took me to the hospital and did a bunch of tests. They treated me with morphine for the pain. They also did a CT of the head and a lumbar puncture to rule out an aneurysm or meningitis. All my tests came back negative and they sent me home with pain medicine and instructions to follow up with a neurologist. On Wednesday we called to make the appropriate follow up appts with my pcp and neurologist. I was still having horrible pain, but not as bad as the day before. The headaches became more positional, which as a nurse, led me to think I had now developed a spinal headache on top of the existing headache. We saw my PCP on Thurs for follow-up, who ordered an MRI/MRA of the brain. My blood pressure was within an acceptable range, and he too felt I had developed a spinal headache. He set me up to have an Epidural blood patch the next day. So on Friday, we went in for the blood patch, which did not work. That afternoon we saw the neurologist. He felt very strongly that this was probably a new type of migraine. He started me on Elavil and gave me more pain meds. We were to follow up with him again on Mon. Friday evening I had the MRI/MRA. The weekend came and I continued to feel horrible. I had been in bed all this time, not able to function normally. Rob was home taking care of me and the kids all week. OVer the weekend my headaches got worse, and I had at least 3 episodes very similar to the first one on Tues. Monday came and we went back to see the neurologist. We questioned him on his thought process and again he very strongly felt it was migraine. He did order a CTA with venous studies of the brain to look for clots as a precaution. He increased the Elavil and started me on Prednisone, appropriate treatment for severe migraine. I felt and looked horrible that day. The headaches were still positional, and so, he went ahead an ordered a repeat blood patch, as sometimes two are necessary. Tuesday (now one week later since the initial attack), I woke up and actually felt better than I had in a week. The pain was much better! Rob called to let the neurologist to let him know that I was better, and did we still need to head to the hospital. He encouraged us to go ahead and let the anesthesiologist make the call as to whether or not the blood patch should be repeated. On the way to the hospital I started to have another episode. By the time I got to surgery dept, I was in another full blown attack...worse than the initial one. At some point in time, and this is where it gets fuzzy for me, my BP was 234/130. The blood patch was repeated, and they were treating my blood pressure with IV medication. I had now bought myself an admission to the CICU. (This just happens to be the floor where I had worked for 2 1/2 years).