How did I get here?

On Wednesday, July 1, 2009 I interviewed for a QA Lead position with OneShield Inc in Westborough Ma. The reason this is important is because I had to climb four sets of stairs for the interview, two from the parking lot to the building and then two to the second floor.

On Wednesday, July 8, 2009 I received a job offer for the QA Lead position and immediately said to Jim, 'How am I going to climb the stairs?' Somewhere between the 1st and the 8th of July I developed stiffness in my knees to the point that I could not climb stairs.

On Wednesday, July 15, 2009 I went to breakfast with the OOWG (Out of Work Gang), we'd been meeting for breakfast once a month for a few months at that point. I have the great pleasure of announcing I had received and accepted the job offer at OneShield and would start work on Monday, July 20, 2009. We discussed the stiffness in my knees and Cheryl suggested I take ibuprofen. I actually took Tylenol instead..had no ibuprofen. I was very pleased with the outcome...the stiffness disappeared.

I continued to take the Tylenol when the stiffness came back off and on until my annual physical on Sept 9, 2009. I mentioned the issue with my knees and was told by the Nurse Practioner that I see (Paula Sommers) to stop taking the Tylenol and take Ibuprofen for two weeks. If the stiffness was not gone after two weeks I should come in for a follow up appointment. She also recommended I take Glucosamine Chondroitin. The ibuprofen worked very well, the stiffness went away and for the most part stayed away.

Over the next few months I would occassionally take the ibuprofen to relieve the stiffness in my knees.

I had the day before Thanksgiving off and as is my usual routine I spent the day in the kitchen baking. Thanksgiving morning I could barely move because the pain in my knees and now ankles was so severe...of course I went directly to the ibuprofen. It definitely helped with the pain but I was taking a lot of ibuprofen on a regular basis.

Jim and I celebrated New Year's Eve in Boston, which is what we do just about every year now and because we do that I knew to make sure I had lots of ibuprofen with me or I'd be pretty much useless.

I went back to work on Monday January 4, 2010 and spent most of the day sitting at my desk catching up on emails and trying to get back into the work mode. I had no meetings that day and I am pretty sure the only time I got up from my desk was to grab lunch. At the end of the day when I tried to get up I couldn't...my knees were so stiff I couldn't lift myself out of my chair and support myself in an upright position. This was a serious concern...it had never been quite this severe. I managed to get myself up and drive home....called the Dr the minute I walked in the door but was told they could not see me that day. Made an appointment for the next day. I explained about the stiffness in my knees, the achy, tenderness of my ankles and now, a new pain in my stomach. I did tell them I'd been taking a lot of ibuprofen but never revealed that it was 900+ in a three month period.

I saw Paula on January 5, 2010 and she ordered blood work and prescribed prednisone, told me I'd feel like a million bucks in a couple days. I had not taken any ibuprofen because I wanted her to see exactly what I was experiencing .....I didn't want the medicine masking anything. She was certain the pain in my stomach was from the ibuprofen and told me to stop taking it immediately. Note: I was weighed in at 183 lbs, yes, I really weighed 183 lbs, thank you everyone for not believing that but it is the truth.

I went to the lab for the blood work and it took a solid hour for two nurses to draw the blood. I have since learned that I have 'small, thin, fine, fragile' veins and am a difficult stick. This was the first in a series of bad blood draws. Each subsequent draw was worse than the one before.

On January 7, 2010 I went for my previously scheduled mammogram, the results came back normal.

On January 12, 2010, the doctor called to let me know I needed to take a vitamin D prescription. Based on what I was told it is my understanding that the normal level is between 30 and 74 and mine came back at less than 3. The average Vitamin D dosage for someone with no Vitamin D problem is 1000 units. I was prescribed 50,000 units a week which is 7,142 units daily.

On January 18, 2010 I again called the doctor and again told her I was in pain and something needed to be done now because I could not continue living like this. She had me come into the office and I was again weighed in. This time my weight was recorded at 194 lbs. This is because I was in such pain when they told me to step on the scale I did...with my winter boots on, my winter coat, my pocketbook over my shoulder with a bottle of water in it. They did NOT mention any of that in my chart.

Paula referred me to an arthritis doctor at this point. She also told me to start taking Prilosec OTC because she was concerned I'd developed an ulcer. She ordered x-rays of my knees, ankles and left shoulder.

Side note: I was laid off from Fidelity Investments in February 2009. While I was out of work I'd gotten into a routine of working out on the WII fit for an hour and a half every day. Apparently I was a little too aggressive in the boxing arena.....I hurt my shoulder. I'd had x-rays done at that time, they revealed slight calcification, no tears or other concerns. Paula suggested I stop using the WII Fit...or at the very least the boxing part of it.

It has been suggested that the shoulder issue could possibly have been my first symptom.

I believe this is when Paula first prescribed a pain medicine for me, Vicodin. I hesitated to take this medicine...it is very strong. Paula suggested I play around with the dose...take only half a pill to see how it affects me. I waited until Friday night and took half a pill. I felt safe doing that knowing I didn't have to get up and go to work in the morning...I wouldn't have to drive anywhere...and if it knocked me out I was home so it was ok. Half a pill did nothing. So, I took a whole pill Saturday morning around 8.....at 10:00 my son Jimmy called and the first words out of his mouth were 'What the h*ll is the matter with you'. He strongly recommended I go to bed for about 2 hours and stay there. Best advice ever. A whole pill was too much. I did figure it out though, I was taking 1/2 a pill in the morning...between 8 and 10....and then a 1/2 a pill in the afternoon between 3 and 5 and then a whole pill when I went to bed. This was eventually increased to 1/2 pill three times during the day and a whole pill at night.

On January 19, 2010 I saw the arthritis doctor, Dr Hossey. He did not think the Vitamin D issue and the stiffness in my knees were related. He ordered blood work but told me I had to wait two weeks after the last prednisone pill to make sure it was out of my system.

On February 8, 2010 I woke up and went through the motions of getting ready for work. When it came time to leave I told Jim, I can't...I simply can't go to work like this....drive me in so I can get my laptop...I need to go to the doctor today. He drove me in, at this point I was no longer climbing the stairs but using the elevator...one of the girls I work with raced to my side to help me get to my desk and pack my laptop...she carried it to the car for me....I took the elevator down...ran into another girl I work with who I could tell was stunned just looking at me. My pain was so significant.

I called the Dr as soon as I got home but they could not see me that day...they told me I had to wait until the next day.

On February 9, 2010 I went to the office, Paula ordered more blood work but had the lab techs come to the room I was in instead of making me go to the lab. This was another bad experience. They used hot packs on my hands. The heat causes the blood vessels to rise to the surface supposedly making it easier to 'stick' and draw. So, the first thing to go wrong is a defective hot pack...it actually burned my hand. Naturally they couldn't apologize enough but....

So, they were not able to get enough blood for all the tests...she kept saying 'I think we have enough'....and I said you know what, I'd rather you stick me again NOW and try again NOW than call me tomorrow and say I have to come back. So, they tried, to no avail.....the vein just collapsed as soon as they hit it with the needle.

At this point Paula is convinced I am having a gall bladder attack and orders an ultrasound for 2:30 that afternoon and requested a wet read. I cried when they told me there was nothing wrong with my gall bladder, or kidneys, or liver, or spleen, or bladder or any of the other organs they looked at. They simply did not understand that yes, this is good news but I am STILL IN PAIN.

Paula prescribed Omeprazole DR and then ordered an endoscopy and colonoscopy....both of which came back normal. All these tests, all normal results. What is going on????

I believe this is the visit that they marked my chart as having a 14 lb weight loss....in reality I lost 3 pounds but because they never noted the extra weight for the 194 and I weighed in at 180 this visit...the recorded a false 14 lb weight loss. I eventually explained this to Paula Sommers but I do not know if it ever made it into my chart.

Paula now refers me to one of the PCP's in the office. The nurse calls me on February 24, 2010 to schedule that appointment and says 'How about Tuesday, March 30, 2010' to which I promptly responded 'Absolutely not! I've been in pain for 7 weeks now I am NOT waiting 5 more weeks, try again'. She said ok, how about this Friday ??? Yeah, how about this Friday.

On February 26, 2010 I saw Dr Joel Popkin, one of the PCP's in the office. After examining me and asking questions he said he would order an abdomen, stomach and chest CT Scan. He was thinking something along the lines of blood vessel inflammation or pancreas inflammation.

On March 1, 2010 I went to work. I was still taking the Vicodin, 1/2 pill 3 times a day plus a whole one at night. Something went terribly wrong this day, perhaps it was just my body telling me I needed to take more aggressive action as I was not getting anywhere with all the tests and visits I'd been through. I don't know what it was but I do know the pain level was so severe that I'd taken the three 1/2 pills that day, the last one at 4:30 and then at 6:30 I took a WHOLE vicadin. At 7:00 I told Jim, take me to the hospital. I honestly don't know how I drove home this day.....I was in so much pain, actually talking to the medicine, begging it to kick in please....

The hospital moved very quickly for me....they triaged me within 10 minutes of my arrival and had me hooked up to an IV line (not a pleasant experience...left bruises of course) and gave me morphine. It was about 40 minutes later that I finally felt relieve...that is a lot of pain med in short amount of time but it took a really long time for relieve.

They sent me for a contrast CT Scan at 11:50 and this revealed a mass in my stomach, 2.9 cm and another in my lung.

I was admitted to the hospital and the next day, March 2, 2010 a pulmonary doctor came to see me. Dr MaryJo Farmer. She indicated the need to do a bronchi-scope, this is to pull tissue from the mass to determine what is was. She indicated it was 'contained'. She also mentioned the need for a contrast chest CT scan.

Let me remind you, I am currently being medicated for pain with morphine.

This days events were ridiculous. Apparently you cannot have two contrast CT Scans within 24 hours or it could cause kidney damage. Apparently this is something I was supposed to keep track of....

Dr Farmer mentioned she would do the bronchi-scope on Wednesday morning, she had it scheduled for 11:00, said it is easier to schedule it now and have to cancel than try to squeeze it in later. She also mentioned that I would be going down for the contrast chest CT Scan at 7:30. on Tuesday.

At 7:30 they came to bring me down for the CT Scan...and of course they asked me have you had a CT scan recently? If yes, when and was it a contrast scan. Of course my answer was yes, last night at 11:50 and yes it was a contrast scan. They brought me back to my room without the scan. The nurse called the Dr who asked her to remind me that he had told me I couldn't have two contrast scans in 24 hours.....I am sure he did tell me....but I am equally sure it was not my responsibility to track that information and make sure the hospital knew what it was doing.....they told me they would bring me down at midnight. The nurse told me if they did not bring me down at midnight to ask when I was going.....to keep pushing to make sure I got there. At 4:40 in the morning I woke up and the first thing I said was no one came to get me last night...same nurse, she said yes,...we came in at midnight but you were sleeping, we did not want to wake you so we agreed if you were not up by 5:00 we would wake you and take you then. They took me right away...I was back before 5:30.

I went for the bronchi-scope.....slept through that (along with most other tests I'd had done) and have now been labeled a light weight for medications. At this point, they've done all the tests they ordered and now I have to wait for results. They discharge me telling me it would be 2 - 3 days for the results, I expect to hear back on Monday.

In between all of this I did meet with the oncologist, Dr James J. Rooney. Although no single doctor has actually stated at this point that I have cancer, at least two different doctors have discussed how they would treat it. Dr Rooney has provided specific detail that explains why he feels it is a cancer. #1, sudden onset of stiffness in joints, classic symptom of cancer. #2, red fingertips and bulging, when you slide your fingers over the fingertips they bulge...you can actually see this.

I got a phone call from Paula Sommers that night telling me she was stunned by the turn of events and never suspected cancer. She told me she would be my linebacker for anything I needed....just call her..she has instructed the nurses to interrupt her if I am on the phone. Whatever I need she will help me get it.

On Thursday, March 4, 2010 I get a call from Dr Farmers office indicating they were not able to get what they needed from the bronchi-scope so she has ordered a lung biopsy. She also mentioned that Dr Rooney has ordered a PET scan as well. I fully expected a phone call the next day with these appointments. HA! What a joke.

I called Paula Sommers at 1:00 and asked about the tests, I was told, oh yes, I can see that they've been ordered, I'm so sorry you haven't received a call with the appointment information. Let me work on this and we will get back to you. At 4:00 I got another phone call telling me 'We wanted to let you know that Paula got your message and will be calling you back by the end of the day" to which I replied 'Are you kidding me? You are calling me three hours later to tell me you got my message and Paula will call me back by the end of the day? If I were calling to make an appointment, wouldn't this already BE the end of the day????' Unfreaking believable. Paula called me back at 5:40 and I told her this phone call is a waste of my time. I needed your help this afternoon when I called, you told me you've be my linebacker and move everything out of my way to help me get what I needed and the very first time I call on you YOU LET ME DOWN.

On Monday, March 8, 2010 I called Dr Farmers office to find out what the hold up was and I was told 'we have to wait for insurance approval' for the test. Are you kidding me????? My life is hanging here on an INSURANCE APPROVAL?????????

I called the insurance company on Tuesday, March 9, 2010 when I got home from work and very politely told the girl who answered the phone, I am not hanging up until I get an answer that satisfies me. This is probably the only person who has any compassion in her soul. She told me the department that she needed to speak with had already left for the day...I told her I am not hanging up until I get an answer that satisfies me....she spent the next 35 minutes on the phone making calls...making people go back to their desks to look things up and at the end of the conversation confirmed the tests had been approved by the insurance company.

I have the ability to send and receive emails through Fallon MyChart. I received an email from Paula Sommers letting me know that she'd been following up on the tests to determine approval and would let me know as soon as she heard something.

I responded I'd been on the phone daily since Friday and have already confirmed approval and I fully expect a phone call the next day with the appointments.

I did not get that phone call the next day...it came on Thursday and of course, the right hand never knows what the left hand is doing. They scheduled both tests on the same day within two hours of each other never taking into consideration recovery time...the biopsy has a three hour recovery window.....needless to say, I had to tell them that...they were not even aware of it. They rescheduled the PET scan, so biopsy on Friday March 12, 2010 and PET scan on Monday, March 15, 2010.

Should we talk needles again? The biopsy, needed an IV line. My hands are pretty beaten up at this point but there are no options. They tell me the nurse doing it is really good...they always say that. I immediately feel pain and tell her something is wrong...this really hurts...and she responds it's just a little stick....all done...got it. I again tell her something is not right it really hurts. I go down for the biopsy which they do without sedating me because they need me awake....can't breath in, breathe out, hold it...if you are sleeping!

As soon as this test is done I ask if the IV can come out...they tell me it's the last thing they do before they discharge me....my hand really hurts. I go back for my three hour recovery period.....the end of which they start removing the tape bandage holding the needle down...and I immediately tell them to stop...you're hurting me.....the nurse worked very slowly to remove the bandage and as soon as she has it off she says 'OH MY, no wonder it hurts...the needle is bent'.

My hand is black at this point.

On Monday, I have to have the PET Scan done...another IV....they put the radioactive material in flush the line and remove the needle all in less than 5 minutes. Getting the needle in in the first place is a different story. The nurse doing it was really really good and did not hurt me at all HOWEVER, my veins infiltrated immediately so they couldn't use the line. She tried twice, same thing, had to call another nurse....who basically didn't care if it hurt me.....she jabbed me....wiggled the needle around until she got what she needed and said...'got it'...and left. She put the needle just below where the biopsy needle had been.

You can call me a baby if you want but until you walk a mile in my shoes you may want to hold that thought to yourself. Having an IV line should not result in your hand turning black.


Went to work on Tuesday March 16, felt pretty good all day but pretty tired by the end of the day. I had sent an email to Paula Sommers that morning asking if there might be a different pain medicine I could take that would not knock me out. She called in a prescription for Oxycondone which we determined I could not take (allergic reaction 30 years ago, no idea what it was but they did not want to take any chances or add any issues to everything else I was going through) so they called in morphine instead. Yeah bad choice. I worked from home on Wednesday, March 17, 2010 until 5:00. I went bowling that night. When I went to bed at 9:30 that night I took one pill. I woke up at 1:30 in the morning because of the pain so I took another pill. I ended up calling into work on Thursday....I couldn't get out of bed...the medicine was too strong. I had an appointment with the oncologist at 4:00 that day. Jim was getting concerned because I was not waking up...it's now 2:00 and I can't get out of bed.

Somehow I manage to get up, shower and dress for the Dr's appointment. I am helped every step of the way and immediately lay down once I get into the office. Dr Rooney comes in and explains, it is a cancer, it is stage IV. It is in the back and lung, being in two places is what makes it stage IV. He explains the ACORN study which combines traditional chemo with a treatment called Erbitux. He believes strongly in this study/treatment and says everyone who has used it so far has been successful. Would I like to participate? Of course, if everyone is successful so far, why would I not want to jump on that bandwagon. He says great, we will get you set up..have to sign papers etc. He indicates he wants to do a brain and bone scan because these areas are not covered by a PET scan, he clearly states he does not expect any surprises. He also indicates that I should have a port implanted so I don't have to deal with needles anymore. This is scheduled for Friday, March 26, 2010.

The brain and bone scan are scheduled for Tuesday March 23, 2010. Because I've had so many appointments and delays and starts and stops I mistakenly think this is a week longer than it really is.....I keep pushing for an earlier date....then realize there are none! Being told you hve cancer does profound things to your mind, body, heart, soul, everything.

We go to the hospital for the two scans. It is a long afternoon, we spend time at the oncologists office getting paperwork completed for disability and the ACORN study. The person I work with in Dr Rooney's office is the absolute best, thank you Pam.

I am told the chemo would be a 7 hour treatment on a Monday for the Erbitux and 1 hour chemo daily for 18 weeks. The 7 hour treatment would be repeated every third Monday.

We leave the hospital somewhere in the neighborhood of 3. Sadly, the Dr has already recieved the brain scan results and calls the house. Leaves a message that he will call back. He calls again and tells us there is cancer in the brain. This changes everything. The brain needs to be treated first. This means radiation. We meet with the radiation doctor, Dr Sidney Kadish.

He introduced himself, asked me some questions about how I came to be in his office, did a physical exam which included listening to my lungs, heart, checking my muscle strength (don't let me push your hands/feet/ankles down) stand up with my feet side by side, close my eyes(checking for balance I think). He asked about vision problems, breathing problems, headaches, vomitting, diarrhea. He asked if I was not able to perfor normal daily activities like writing, reading, typing (I told him I went bowling last Wednesday, that peaked his interest.) My answers to those questions were no, no problems.

He then said, you do know that sometimes we see patients and tell them there is nothing we can do for them. This is not the case with you, we can treat you. He asked me if Dr Rooney explained the brain cancer to me and I said no, he basically told me it had been found and that he was working on getting me in to see a radiologist. He asked me if I saw pictures of it and I said no, he asked if I wanted to see pictures of it and I said no. He said that was perfectly ok.

He said that I have one small spot on the lower left brain. Because I have not exhibited any symptoms from the tumor they feel confident about the treatment. They will radiate the entire head at first on the of chance there is someting else that was not picked up on the scan and then they will focus on the one spot itself. I have to be back the same day at 3:00 to have the markers established. It is possible treatment will follow but that has not been confirmed. A schedule of treatments will be provided. Towards the end of radiation I will lose my hair. The radiation will cause fatigue and it is cumulative so towards the end will be the worst part of it. (This proved to be VERY true).

He indicated the port should still be inserted because chemo can start the day after radation ends as far as he is concerned.

We go back at 3:00 and I have a mask created. They do not put permanent markers on the face so a mask is used instead. I am told I will recieve 12 radiation treatments and they will begin on Monday March 29, 2010 at 1:00.