January 31st - Hair today, gone tomorrow

Well I did it, I shaved my head. I probably could have waited a bit, the hair loss I was experiencing was minimal, but I am sick of having no control any more and this is mine to control! So I did it! Head's kinda cold now though, maybe I should move south, could I write it off as a medical expense? : ) I have a wig, it looks nice. I guess I am confusing some people at work who didn't know about the cancer, because I went from long hair to short and back to long again in the last month. Wait until I pull out the pink wig! I'm going all out "Lady GaGa"!
(Disclaimer: For the older generation reading this, Lady GaGa is a very eccentric pop star who is know for her crazy outfits and wigs. See below)

Anyway nothing else exciting to report on the medical side of things. I did go in for blood work on Thursday. My counts were all low, but they didn't seem too concerned. I guess they were still in the "Normal for chemo" range and I didn't ask for specific numbers, I really don't need another thing to google and obsess over at this point.

Good news is, side effects from the first round of chemo seem to be lessening. Even the nausea is getting better. Still much more tired then normal though. But looks like I may be getting a little bit of a "break" before my next chemo on Friday.




(Lady Gaga, where do I get that bow wig?!)

January 25th - Can't sleep

Ok, it is 5 am and I have been officially clock watching since 3. So I might as well blog.

These side effects are really starting to get to me. I think I was more tolerant of them at the beginning, but they have a cumulative effect on you. It's like, ok, little nausea, check. Little heartburn, check. Jaw pain, check. Little headache, check. Fatigue, check. Then...BOOM not the chest pain too!!!

And on top of all of this, all you want to do is sleep. In fact I feel like a moody 2 year old most of the time. The only time I really feel good and rested is when I am first waking up from a nap and then I feel like I desperately need another one 2-3 hours later.

January 22nd - 1 Chemo down, 11 to go!

Wow, what a week! Lots of stuff accomplished. On Tuesday, as expected I went in for my bone marrow test, and got the results of my PET Scan. The PET scan showed no surprises! Cancer was only where it was expected. Yay!!!

After that news I wasn't even that nervous about the bone marrow test. I was so elated, I figured I could take anything! Well that only lasted for the first 5 shots in the rear. By the time the doc started "drilling" through the bone for the marrow, I was feeling it! Extremely painful, but my step-sister (who happens to be an oncology nurse), was there with me to talk me through it.

Then on Wednesday I had my very first Chemo. I had a side effect to one of the meds which left me short of breath and a little scared, but the doctor and the nurses where right by my side and handle everything wonderfully. I really can't say enough about the wonderful staff at my NYOH office.

Afterwards I slept most of the day and night. Had horrible chills and flu like symptoms, but slept so much I didn't spend much time noticing them. Little to no nausea.

Thursday brought much of the same, except much less fatigue. I was able to go to work, I just took some advil and was able to make it through to 2pm at which point I drove home and went right to bed.

Today I made it through the whole day at work. Flu like symptoms are gone. But for some reason, I was slightly more nauseous then the previous days (thank God for good drugs, I used them all today!) I still seem to tire easily, but I expected this.

I also have more good news to report, my bone marrow test came back negative! So I am, in fact, 2B. I am ready to fight! I only wish I could do Chemo every week instead of every other! Let's get it out!

January 18th - 2b or not 2b...

Anxious tonight. Big day tomorrow. I have completed all of the "tasks" necessary to begin my chemo. Funny thing is each procedure got worse as the week went on, maybe they plan it that way cause they know you would probably head for the hills if they did the very worse first. My port placement on Thursday was very difficult both physically and emotionally. The pain was much worse then from the biospy and it is only today starting to feel better. Emotionally, I feel like having this stupid port in my chest is just further proof that I am sick. It is on the opposite side from my biospy site so my upper chest looks like it has been carved up like a Thanksgiving turkey. Good thing scarves are back in.

Tomorrow is my bone marrow test and my meeting with my oncologist to get the results of all of last weeks tests (most importantly, the results from the PET scan). Everything hinges on that. My diagnosis of being stage 2b is only vaild if the PET scan shows no further spread of the lymphoma. Very anxious about the bone marrow test, I have heard everything from "it's okay" to "it's worse then childbirth". But at least I know it will be the last of the invasive tests that I will have to go through. After all this, chemo should be a walk in the park. : )

I also found out that my first round of chemo will be on Wednesday! I am looking forward to getting going on my treatment, the sooner I begin, the sooner it will be done.

January 11th - beginning of a very long week

Lots of pain in the chest tonight so I decided to blog about my day to get my mind off it.

Had chemo class bright and early this morning at the oncologist's office. Me and a bunch of grumpy older folks who were shouting at the tv cause they couldn't hear the instructional video. Then there was the guy who smelled like he just smoked a whole pack of cigarettes on his way in. Come to find out, he has lung cancer and is about to begin chemo to try to beat it. Why bother with the chemo if you aren't going to quit? Maybe I am being too judgemental, but I am an ex-smoker and I can't imagine a better reason to quit then to try and save your life. After the class, I met with the nurse and she answered some questions and gave me a pile of scripts to fill. 3 for nausea! The first one as a preventative, second one for when that doesn't work, and the third for when you can't stop puking. Sounds like a blast! : )

After chemo class, I had my PFT (lung test). That was excruciating! The pain in my chest was awful while I was doing the test, but the tech said I did really well and everything looked good.

I made it to work by noon and I was so happy to be there! Sometimes I just need to forget all this stupid cancer stuff and go back to my normal life. In fact I really didn't want to leave at 5.

After work I went to get my prescriptions filled and found out that the most important one is going to cost me $10 a pill! That's just my copay, the pill is around $600 without insurance! I really don't know how these drug company CEO's sleep at night!

Really nervous about the PET Scan on Wednesday and the Port Placement surgery on Thursday. Wish me luck!

January 7th - First meeting with Oncologist

Okay...long awaited meeting with the oncologist today. She was great, the whole office was very friendly and genuine but, it was different than I expected. Well not really, my reaction to it was different then I expected.

First off, the boring technical stuff for those interested. I found out today that pending a "normal" PET scan and bone marrow test, I have Hodgkin's NS Stage 2b. Funny thing is, after having done a little online research a while back, I had already diagnosed myself with NS Stage 2b! I think I should have gone to medical school! The plan will be ABVD chemo every other week for 6 months. Doc says this chemo will certainly cause me to loose all my head hair, but I should keep my facial hair, the eyebrows, eyelashes and chin hairs : ) (I am Italian you know) I will also have practically no immune system so I will have to get all of my shots and I will have to have my white blood cell count checked all the time and if it dips I will have to stay home and away from people. All of this I can deal with. But...

My staging and treatment will change if the PET Scan or bone marrow tests show something else. Or my heart and lungs don't pass their tests. So more things to worry about!

All in all, I have another SIX procedures/tests to pass before I can start my treatment!

I thought I was going to feel relieved, knowing more then I had before and getting a plan in place. But now I just feel overwhelmed and worried that I am not going to pass the tests that I need to in order to keep this thing curable. I can deal with 2b, I don't know how I am going to do if I have to take any more bad news. Everyone says, "Don't worry, I am sure all the tests will come back fine." And I am sure that is true for someone with even a little bit of luck. But the one thing I have learned over the last few years is I am not a lucky person! But maybe it time for my luck to change. I have always held onto hope and faith somehow. And I believe in the power of prayer! So please keep them coming.

January 3rd - Mom I'm scared

First off, I managed to make it almost completely through today without crying. If I had made it would have been the first tear-free day since the dreaded Christmas Eve. But I didn't....

I have been feeling pretty good physically so I went to the mall with my mom to check out wigs and do some after Christmas shopping. All of a sudden, I began feeling a sharp stabbing pain in my chest once again. It caught me by surprised and scared the sh*t out of me! Guess I shouldn't be too surprised. I am not on the prednisone any more, so why wouldn't the pain come back? I just turned to my mother and said "Mom, I'm scared." Thank God my mom was there to talk me through it. She said all the right things and it quickly passed.

Rest of today was pretty uneventful. Although I am getting anxious to be shortly arriving at the "Next Business Day", which means my biopsy results will be in. But I don't want to know them until I meet with the oncologist and they are interpreted for me in non-doctor speak.

And then came the hardest moment of the night, putting my 11 year old son to bed. He can't sleep, he just says, "Mom, I'm scared". But I didn't know what to say, sometimes there isn't anything that can be said. Or maybe I don't have enough "mom experience" under my belt? And that is when the tears came.

On a lighter note, there will be more tears at work tomorrow, when I see the piles of work on my desk! The sick part is, I am actually looking forward to it!

January 1st 2010 - New Year?

Happy New Year... I guess...

So far for the last 3 years each New Year's Eve I have said "Wow, thank God that year is finally over". Because unfortunately this struggle that I am going through now is not the first major hurdle in my relatively short life.

I lost my father to a very rare, extremely debilitating disease in 2008. He suffered for a long time both physically and emotionally before he passed away and I had spent a lot of time caring for him. Of course I did so lovingly and I am glad I had the time with him that I did.

A few short months after loosing him, I was hit by a car while walking down the street and suffered damage to my right shoulder. I was extremely lucky that I only took it in the shoulder. But after 8 months of physical therapy with no improvement, I finally had surgery on it to correct the damage and to this day it is not 100 percent. Most of what I experience now is weakness in it. The pain is gone for the most part. The only time I really have any pain is when I am stressed. So needless to say, in the last week it's been a little achy. And my neck hurts too from the biopsy, but I'll quit my complaining now!

So...Happy New Decade!

December 30 - Biopsy time

After a very long holiday weekend, I had my consultation with the thoracic surgeon. He explained that I would need to have a biopsy done before any of my questions could be answered. Luckily he didn't make me wait very long. Waiting truly has been the worse part of all of this.

On Wednesday, December 30th, went into the hospital to have a biopsy done of my lymph node just above my clavicle. I was very surprised to find out in the recovery area that it wasn't just a biopsy but they had removed the whole lymph node! And hey, the less cancer in my body the better, I figure! I was also given a little more positive information, the surgeon said that it appears to be Hodgkin's lymphoma (slightly more treatable then the Non-Hodgkin's type) and the mass further down was connected to the node that he removed. But that little bit of relief was quickly replaced with new sadness when I realized that in order to take it out, he had made a huge incision across my lower neck. Wasn't expecting such a large one. I know I should not be worried buy such trivial things as scars as this point, but I can't help be a little vain even now. The biopsy results, to determine which kind of Hodgkin's (apparently there are many) and the stage of it, would be delayed slightly, by once again, another stupid holiday weekend! I thought I was supposed to enjoy these breaks from work!

Christmas 2009 - So the fall down the rabbit hole begins

Christmas...my 28th one to be exact...my favorite time of the year. Spent months shopping for the perfect gifts for everyone I love. Can't wait to see their faces when they open them! I also look forward to getting my old country farm house decorated and entertaining. I especially love having the big family Christmas Eve party at my house!

In fact, this year I had planned to do both Christmas Eve and Christmas dinner!

One little snag, since October I had been getting sick a lot. Having breathing problems, soreness in my neck and enlarged lymph nodes. So when I started getting the symptoms again and a fever a week before Christmas, I started to get nervous about hosting this year. But, I have my husband, my mom and my wonderful 11 year old son to help out so we would get though it.

My doctor referred me to an ENT doctor for an appointment Christmas Eve morning. After meeting with the doctor and not getting much of an answer I was sent "downstairs" for the CT scan of my neck. I was in so much pain I could bearly lay my head flat to do the scan.

The techs that do these scans aren't very good actors.

They are not supposed to tell you anything about what may or may not show up on the scan, but when they start freaking out, running over to the display monitor and banging on the glass...well, you know something just isn't right. My world fell apart in that instant. Nobody would tell me anything except for that they "saw something" and needed more pictures. That was enough. I couldn't see through the tears pouring out of my eyes. And that was just the beginning.

At 12:30 in the afternoon, I got the call from the doctor. She had the CT report from the radiologist.

"You have a mass in your chest, we don't know what it is for certain, but it appears to be lymphoma. We won't know for sure until they do a biopsy." "A Thoracic Surgeon will call you in four days." "Merry Christmas".