Pre-diagnosis: Colds, pain, bumps in the night and “The Great Depression”

This is a very long post, I acknowledge that - but I had to get everyone caught up.  It took several sessions of several hours each to write this.  If you need to read it the same way it was read, I understand.

My only goal in this post is to get all you readers up to date to at least the diagnosis. I guess it is somewhat important, if I am going to tell my “story” to establish the beginning of everything. I noticed things starting to go downhill about August of last year (2007). Looking back, I see things in phases, 3 main phases. I have my tired phase, my insomniac phase and the phase I like to call “The Great Depression”. I don’t know for sure if everything I went through is related to my diagnosis, but looking back, even sometimes further than last August, it makes me start to wonder how long I really have been battling this and how many years back this really goes. By the information I have gathered through tests and treatments, and not going into any detail here, but I wonder if I could have had this for a good 5-6 years now. One main symptom I have had is tachycardia (rapid heart rate). I remember being pregnant with my 2nd child in the beginning of 2000. At times I could be sitting there with a racing pulse rate of 155. Many many tests and no reasons found or explanations given, I kinda learned to deal with it and accept it. Now in speaking to my oncologist he thinks it is related to the Hodgkin’s and I don’t think I entirely disagree. As early as my 2nd chemo treatment, I heart rate had already gone down to about 105 on a consistent basis.  I also had had this nagging cough since around the time I first daughter was born back in 98.  That too has since gone away. So have I had Lymphoma that long? Makes me wonder. But anyhow, instead of rambling about that, let me get back to the topic at hand - when I started to go downhill.

Phase 1: Colds and Exhaustion August 2007 - November 2007

August was a decently hard month for me.  My car broke down and I found myself walking and taking the bus everywhere.  The hardest was taking both my daughters school shopping while on the bus.  Yikes.  The is the first I noticed the exhaustion.  All the extra physical effort I was putting forth was starting to take its toll on me.  I quickly got my car fixed (within a week) but the back and leg pain and the exhaustion just didn’t seem to be going away.  That whole summer to that point I had stayed pretty active.  I would go swimming on a regular basis, had actually made it through the mall a few times (I’m not a mall person), was outside constantly.  Was doing good.  But yeah, after the car thing, my energy just seemed to deplete more and more.  It got to the point I would crash on the couch at 6pm.  Being an early riser, for the first time EVER I would sleep until 11 or noon.  It soon got to the point as soon as work was over I would somehow manage to crank out something easy like mac n cheese for the girls to eat and then we would promptly go down for quiet time by 6:30 or 7.  They would be up awhile reading, I wouldn’t make it past a page in my book.  I ha no energy for anything.  I wondered if it was because the weather was changing, becoming more fall-like.  I have always tended to get depressed and more anxious when winter hit.  I thought maybe I was just anticipating the winter a little early and getting bummed already. 

My house started to decline as quickly as I did.  I had not the energy nor the effort to maintain it.  Would have to wash dishes to be able to cook or eat, laundry was being done at night just for the next day.  I didn’t even know where the vaccuum was.  Bad in a small 2 bedroom apartment, huh?  If I ever did have the energy the motivation level, or lack there of, was just enough to keep me from caring to clean it.  I could feel some depression creeping on.  Had depression on and off since I was a teen.  Crap, here comes another spell of it.

By August I had had literally like my 7th or 8th cold of the year.  I was always coming down with a cold.  Plus my nagging cough had gotten so much worse.  I was constantly out of breath, even talking in a normal conversation I would get super winded.  I managed to find Theraflu Warming Nighttime Cold Medicine.  What a Godsend!  It wasn’t nasty going down, it stopped the cough and it made me sleep.  Not that I needed help sleeping at this point, but it was nice let me tell you!  I soon got “hooked” on the Theraflu.  Not physically hooked, but being on the phone all day at work, coughing up a lung every 10 minutes got to be a bit aggrivating.  To myself and my boss.  I would remember him remarking how I need to do something about my cough.  Having to constantly ask the person on the end to hold a minute until each coughing fit ended, I didn’t blame him for getting on me.  Hence the daytime cold medicine.  It got to the point I would go through 2-3 bottles of each the daytime and nighttime cough syrup a week. 

Phase 2:  Insomnia November 2007 - January 2008

By the end of October / beginning of November, I thought I had slept too much.  I guess I started feeling a bit better, aside from the constant cold at this point.  I wasn’t sleeping as much.  Was able to stay awake a little later at night.  Maybe I got all rested from the previous 3 months of sleep?  Nope.  I was quickly turning into an insomniac.  I had tried to ween myself off the cold syrup.  Was getting worried since I had been taking it so long, but the nights that I didn’t use it I couldn’t sleep a wink.  I had tried lavendar essential oil and sometimes…SOMETIMES that would help me sleep a little.  I would remember being awake until the birds started chirping and the sky got a bit lighter.  The cold syrup would work, so I would use that just to help me sleep.  Until I had a revelation.  I found out that Tylenol PM had the same “sleep” ingredient as the cold medicine:  diphenhydramine hydrochloride - “Benadryl”.  Awesome!  I was always afraid to try Tylenol PM just because I didn’t want to play around with sleep meds, etc.  Yes, I’m a chicken.  Anyhow, so when I found out that I could take Tylenol PM and not have to take the cold medicine, Theraflu was quickly replaced with that.

It worked well for awhile.  At first I only had to take one, but as my back pain increased, and I guess somewhat of a resistence to the benadry portion, but the end of December I would have to take a full dose, which is two tablets to be able to sleep.  This is when the itching started too, it was winter - I was getting MAD dry skin.  I remembered it was bad the winter before, but man, it’s a little worse this year.  So I thought.  By the end of December the itching became a bit more fierce and the Tylenol PM was working most of the time, though not all of the time.  Sometimes I would find myself having to space out the two tablets or would have to take a second dose, which I hated doing.  I would wake more groggy in the morning, plus I worried about overdosing on the crap.  Also, my back pain at this point was enough to disturb my sleep greatly.  I thought it was the pull-out bed.  At the time I had been sleeping on the pull-out because my bedroom had gotten to the point where no one in their right mind would sleep in it.  It was trashed with dirty laundry everywhere.  I went to Walgreens one day to replenish my Tylenol PM collection.  I was out and HAD to sleep that night.  I think I had bought all there was prior to that because Walgreens was plumb out of Tylenol PM.  I saw the Advil PM and conceded I would have to get that to use.   It was on sale buy one get one free, I think I bought 10 bottles total.  I still have a couple left somewhere.  The Advil PM was awesome!  It had a different type of diphenhydramine - diphydramine citrate, and it had 38 mg compared to Tylenol PM’s 25 mg.  I thought maybe the different type of Benadryl in it was helping with my resistence to it and the Advil sure did feel better for my back. 

I was sleeping a little bit better, but this time I think that cold I had had “settled in my chest” and I was coming down with bronchitis.  The itching was becoming a little more unbearable at this point.  I would wake up, despite the sleeping aids, itching and would sometimes keep me from falling back to sleep.  I didn’t know what to do at this point.  I read somewhere that too much diphenhydramine in your system can cause rebound symptoms, some of them being itching and insomnia.  I tried not to take the Advil PM as often but I was kinda stuck taking it at this point if there was any chance at all.

 Phase 3:  “The Great Depression” (January 2008 - April 2008)

I mentioned earlier I felt it coming on, but by the 2nd week in January I started to hit rock bottom.  Along with the itching, the insomnia, the exhaustion, the colds - here came the depression.  I lived all of January in a fog.  I don’t remember anything.  My mom left January 5th (was visiting for the holidays).  After that I have no clue what happened.  I know I must have managed to get through in some capacity, obviously.  I am still here, but how, I have no clue.  The depression hit, and it hit hard.

I would spend most of my free time sitting on the shower floor.  Water has always been soothing for me, thought it would help.  It at least helped chill me out a little.  If I wasn’t in the shower I was in bed - just trying to make it through another day.

My lease was ending the end of February.  The last week in January I do remember going to apply at another apartment complex.  I thought I had maybe just lost all motivation and had gotten depressed because of my living situation.  After 3 years of living there, my apartment had started to get run down, and I hadn’t cleaned in only God knows how long, aside from the apartment space itself being dysfunctional.  I figured a change of environment could do me some good.  I thought it might pull me out of the depression and give me back some of that motivation I had completely lost.  Within a week and a half I had signed a lease on a nicer, bigger apartment, with a MUCH MORE functional living space.  I was hyped.  This newfound motivation, increased energy and happiness lasted about a day. 

The day I signed my lease I started moving in and sleeping at the new place.  I couldn’t find my Advil PM so had to sleep at the new place without it, but you know what?  I didn’t need it.  I slept like a baby at the new place.  But the depression soon returned.  I had kept the motivation up, but the energy level and the “bronchitis” was still a huge problem.  The itching was worse than ever and by this time I had permanent sores from all the scratching.  The scars are just now starting to heal…  I was feeling sick quite frequently too.  From my stomach hurting, to headaches, and increased back aches.  I thought it was all related to “The Great Depression”.  I had also, within the past couple weeks, had found a large round hard spot in my groin.  I didn’t know what the hell it was.  I thought I would give it a bit to try to resolve itself but it never did and I knew I had to go in.  Since I was having the depression too, I thought this was the perfect time to go ahead and get treated for the depression since that didn’t seem to be resolving either.

 I made an appointment with a doctor practice that I had been to once before.  I tried to see a physician that I was referred to but she was going to be unavailable, so I took the soonest appointment I could do to the fact I had this “bump” that wouldn’t go away and this terrible depression was getting worse by the hour.  I was able to get in the next week - yay!  Only a few days to go, and I could be medicated!  (The depression was my greatest worry at this point.) 

Now, excuse me for saying this but this doctor I went to see was an IDIOT!  OMG!  She blamed me for being late (I made it into the room itself at 12:08, my appt was at 12.  But of course I had to WAIT to get into the room!)  Because I was late, (sigh.) she refused to treat me for my depression.  She would only take 5 minutes to look at my lymph node.  She felt around for a second then told me that she didn’t know what it was and started to get my file and her things to walk out the door.  She told me she wanted to see me back in two weeks to see if the “bump” resolved itself.  I was like hold on a second!  I asked about getting on an antidepressant too.  I told her that my depression is at a point where I can’t even function on a daily basis.  I was broken down, literally, I couldn’t accomplish anything.  She told me that since I was late, which I wasn’t, she didn’t have time to treat me for that and she would “analyze” me the next time I came in.  Good thing I wasn’t having suicidal thoughts, but how was she to know!?

Having been handed a great deal of discontent, more than I already had, I left the doctor’s office kinda lost and not knowing what to do.  This crushed me more.  I had to get back to work after the appointment, but when I got home I called my mom and explained what had happened.  I told her I felt “sick”.  This term had become the term I would generally use when I was facing my daily bouts of dysfunction and shutting down.  I headed straight for the shower, as I normally did when I got home, and sat there silent on the phone, with the water pouring down on all but my head, in silence completely lost.  I went to someone that was supposed to help me and do their best to make sure my overall wellbeing was secure, and I was rejected and very unwell.  I was crying again, this was a common occurance.  I would cry 3-4 times a day on average.  I had this impending doom hanging over me and thought that this was my new life, there was no way to come out of it, and that there would be no one to help me.  Throughout the night and the next couple days I felt I was at the end of my rope and thought maybe I was just “at the end of it all”.  I thought everything was done, I had accomplished all that I will and that maybe, especially with the “bump”, maybe I was getting close to my ultimate demise. 

A couple of days later coming out of the depression enough to think a little bit more clearly, and with the urging of my mom, I decided to call the clinical coordinator of the clinic, explain what happened and ask if there was any way I could get a prescription for Lexapro called in.  The clinical coordinator apologized profusely as I told her my situation and how I was concerned for my general wellbeing.  I explained how the doctor shrugged me off and mention how it WAS good that I didn’t have any suicidal tendencies.  She told me that she would talk to the doctor and tell her how this was unacceptable and would see about getting me a prescription from the Lexapro.  She called later that day and told me a prescription had been called in, to check with the pharmacy to see when I could pick it up, and that she had talked to the doctor.  I was so excited!  I left work to go get the prescription.  Even though it takes a couple weeks to start working, the sooner the better!

 I rushed back to work with my new friend named Lexapro and took one as soon as I sat down at my desk.  Now, I have never been a pill taker, kinda have to choke them down (even the sleeping aids), truth be told, but this was one pill that I was MORE than happy to take.  I hadn’t been happy in a while.  Hadn’t smiled in a few months at this point, but as soon as I had taken that pill, I felt like a weight was lifted off my shoulders.  I was unshackled…freedom.  I was going to be better.  Remember, at this point I wasn’t all that concerned with the “bump”, that was actually one of the last things on my mind.  I just wanted to be “not sick” anymore and be happy. 

I was very happy the next half hour or so until I couldn’t be anymore.  My face started to get a little flushed, my head felt kinda light and I start to become a little bit puzzled.  The next couple hours I became zombie-like and just started to become kinda “out of it”.  I didn’t know exactly what was going on.  I mean, I knew I was at work and I was oriented, but I just didn’t understand what was happening around me.  People were coming in and out of my office and they would just look at me and ask if I was ok.  Conversations were occuring around me, and including me, but I would just sit there somewhat stupified.  Everything was “coming through in waves”.  I felt separated from myself and detached from anything and everything.  I somehow managed to get my kids from daycare and make it home after work, but shortly after making it home I fell asleep.  If it weren’t for my best friend being around that weekend I don’t know what I would have done.  He helped me get the girls fed before I passed out, which I truly think is what I did, and hung out awhile to make sure I was ok.  I slept more than soundly through the night until late the next morning.

I thought most of the effects of the medication wore off.  I didn’t know what the heck happened!  I knew I needed to make it to the grocery store - though the task seemed to be overwhelmingly daunting.  Feeling a little bit of a hangover just not “great” I thought it would be good to go ahead and make up a list of what was needed so I could be in and out quickly.  I stared at my notepad for about 15 minutes, not knowing exactly what I was doing.  I couldn’t make any logical connection and wasn’t able to come up with even the simplest of things like milk and bread.  I called my mom and just told her that I needed help making a grocery list.  She didn’t quite know why and didn’t understand why I needed her help; I’m sure she just thought I was sick as always and was having another bout of not being able to function.  She helped me write out a list with some things to get and some things to prepare meals for the next week.

Everything was going fine for the first few minutes at the store.  Myself and my daughters and their friend was cutting up laughing making jokes, when all the sudden I felt weird.  Usually when I went to stores, after being there a few minutes, I would become very shaky, my back would start to hurt severly and give out and I would become very tired within a couple minutes of getting there, but this was all that plus more.  I shortly started to become somewhat confused.  I could no longer follow the grocery list - I would look at it and it would look Greek to me.  At some point I just had the girls put stuff in the cart that they “knew we needed”.  (I wrote a check for 108 dollars that day and STILL have no clue what I got.) 

We quickly made it to the checkout - I didn’t know how much more I could take.  I knew something was wrong but with me being so out of it and confused, I just knew I had to get out of there.  (Because operating a 2-ton vehicle all the way home seemed like a very logical idea at the time!!)  The girls helped unload the cart while I attempted to write a check for the bill.  I did notice that the checker kept looking at me.  She did the whole head cocked, brows furled glancing back and forth between my shaking hand that couldn’t write straight and my increasingly nodding head.  Feeling more light - weighted, I attempted to lean more and more on the check writing stand to steady myself.  Becoming increasingly aware of her looking me up and down, I thought I owed her an explaination.  I could just imagine her calling the cops on me for endangering 3 children as I am coming off my drug - induced high or that I was drunk.  I just mentioned that I was having a bad reaction to a new medication the doctor prescribed me and that I would be okay in a minute.

Just as soon as I offered her my explaination she was rushing to get me to sit down.  All the sudden everything started going dim, a very dark tunnel vision hit.  The next thing I know I am sweating and my hearing is starting to go.  She got me sitting and there I sat for a few minutes.  I noticed a chair by the service desk that was in the direct path of a blowing fan.  I somehow managed to make it over there a couple minutes later - staggering the whole way I’m sure.  Soon after I was greeted by the store director, which I am still in contact with to this day.  She asked if I was okay and suggested she call 911 to get an ambulance there to help.  I can just imagine myself and the 3 girls rushing off to the nearest hospital with 108 dollars worth of random groceries sitting there.  I kindly declined, again gave an explaination as to what I thought was going on and she offered me a Pepsi on the house. 

After I “came too” - my hearing was fully restored, my sight was no longer tunneled, I wasn’t shaking anymore and the head nods had disappeared, she walked me back to the pharmacist so that I could explain to her what had happened and to make sure those were “common side-effects” of the medication.  The pharmacist told me that I should have been started out on 5mg of Lexapro instead of 20.  I was “technically” overdosed but I had too much in my system.  She said to stop taking it and to contact my physician as soon as I could.  I called the doctor on-call on my way home and they agreed that I should stop taking it and to call back on Monday and make an appointment to see my doctor.

I did call the doctor’s office on Monday, but there was no way I was going to see that same doctor.  I asked if there was any chance I cold see the original doctor I was supposed to see.  They were able to do that, AND they did it sooner than the 2 weeks I was originally supposed to wait.

While the past several months had managed to drudge on, this is where everything picks up and to date seems like it was about a month ago, when in all actualality was almost 4 months ago now.  I made it to my doctor’s appointment, but when everything that was going on I guess the depression became a moot point somehow.  I was very concerned about my “bump” and wanted to do all the necessary tests that she saw fit.  I had a “womanly exam” (she wanted to test me for all sorts of STDs, although I assured her that wasn’t even possible of being an issue) and she took blood for blood tests.

She called me a couple days later and told me that my labs looked great except that I was severly anemic.  She said that my hemoglobin (hgb) was 8.2.  (Normal hgb levels are 12-16 and they start doing blood transfusions around 8).  Because of the medication “overdose” experience I had, I made sure to ask that my kidney and liver functions were okay, because I was afraid that perhaps my body wasn’t metabolizing or excreting the medicine correctly.  She assured me that everything was fine, aside from my hgb, and wanted to see me the next week to follow up on the “bump”.  I was ecstatic that my blood tests had come back good!  I had been so worried that something was wrong and clearly there wasn’t.

At my next appointment she referred me to a radiology clinic to get an abdominal CT scan with contrast and without.  She wanted to make sure that the “bump” wasn’t an off-shoot, if you will, of something more serious going on.  She also sent me out for more labs.  While I was waiting for the order for my lab work, she walked back over to the desk and wrote two more tests down on the order form - one of them being CA125.

I went to nursing school a few years ago and nearly finished, I had learned enough to know was the CA in CA125 meant.  In the medical field, cancer is commonly abbriviated as “CA”.  Now, that was just enough to get a little nervous.  I confirmed my suspisions with the tech that took my blood at the lab.  He said the test is to check for a particualr cancer marker.  Sigh.  I knew it.  The next few days I called the lab regularly to see when my lab results would be ready for pick-up.  It took 4 days.

In the meantime, I had to go for my CT scan.  I was completely nervous about this.  this had been the first time that I would have an IV in 8 years since I had my daughter.  The awesome tech walked me through every step of the process, including the whole-nother glass of barium I had to drink, and was good at keeping me calm and sane throughout the whole process.  I overcame the clostophobia, the IV insertion and was doing good until about 5 minutes into the test.  They stopped the testing and just left me lying there for a few minutes.  After about 10 minutes of lying there clueless I started getting a little concerned.  The tech came in soon after and told me that it would just be a few minutes, that they were trying to get ahold of my physician to see if she wanted them to do the chest as well.  I asked if there was a reason why, or if there was some specific reason that they decided to do this.  She replied that there wasn’t other than they thought that “if they were going to do my abdomen they might as well do it all and they needed doctor’s orders to do it”.  Her best attempt at a little white lie, I imagine.  What I think happened is they might have caught a little something higher up while doing the abdominal portion, brought it to her attention and suggested they go higher.  Either way I am thankful they did.

Thinking way too much about the scan and what happened I started to scare myself a little.  I was freaked out that whole night and the next day when my lab results finally became available.  I picked up my lab results, probably not with the blessing of my doctor and had it in black and white.  The first thing I looked for was my CA125 results. I first looked for what the lab listed on the paperwork as normal limits.  Apprehensively I looked over to what the results were and my heart sank.  Normal limits were below 21 - my results were 217.  I think the 217 was high enough to cause a little panic, seeing as how it was nowhere near the normal values.

I told the necessary people I know the test results.  I made sure to tell them that I had to wait to see what the doctor had to say.  CA125 levels can be falsely elevated due to other things, such as certain infections, etc.  Though, I was pretty sure there was something going on and the truth of the matter is, I was terrified.  Everyone asks me how I didn’t freak out.  I think I did my share of freaking out but I internalized it.  But I also wanted to remain positive.  I am a firm believer of mind over matter, I wasn’t about to let this get me down.

I had my doctor’s appointment a couple days later.  I was okay at the beginning of the day, but the pressure started to wear on me.  Sitting in the waiting room I became increasingly fidgety and nervous and by the time I made it back to the room I was in tears.  I managed to calm myself temporarily until the doctor came in.  She gave me the usualy friendly greeting and “how are you?”.  She sat on her stool and I just lost it.  I managed to get out the words, “I don’t want to hear the bad news, and I know you don’t want to tell me, but it has to be done…Don’t sugar coat anything, just tell me now and tell it to me straight.”

She took a second to compose herself.  I don’t think she was expecting to hear that from me.  I admitted to her, during her moment of silence, that I had picked up the lab results a couple days earlier.  She kindly nodded and told me straight out.  She told me that she got the CT scan results and it appeared that I had enlarged lymph nodes as she had suspected and it looked like there were some lung masses along with it.  I quietly acknowledged what she was saying, my heart breaking, and let her continue.  She said that she suspected lymphoma and called an oncologist she knew to get his opinion.  She said that he wanted to take me on as a patient and I had two choices.  Go to the hospital and be admitted that night or to be in his office at noon the next day.  I opted for his office at noon.

I asked her some questions, maybe looking for a little reassurance, maybe looking for the ultimate bad news.  She said that she really had a good feeling about it and said she thought I would be okay.  She said if it is lymphoma that it would be a long, hard road, but I would be okay.  She said I am free to call her at any time to ask questions or to gain understanding about anything that comes along.  I thanked her, I think she even gave me a hug and I was on my way.

I think I sat in my car for about 5 minutes.  I gave myself 5 minutes.  I didn’t look at the clock, but it was about that.  I remember the first Lost episode (for those who love Lost will know what I’m talking about…), but I remember Jack said he counted to 5 and that is all the fear he would give into.  After that it was time to move on and he did.  I thought this deserved a little more than counting to 5, so I agreed to 5 minutes.  And that is all it’s been.  To be honest, I think everything has moved so fast I don’t think I have time to stop and actually be scared.  We are talking about a 3 week period or so, and then after I was referred to the oncologist, it has been non-stop. 

Besides, I don’t have time to stop and fear this.  I need to get better and I need to get better now.  It’s all a state of mind, and I can’t waste the very little energy I have worrying about what could happen.  I only have the energy to worry about what WILL happen…And that’s me getting better.