MY PORT HAS A NAME!!!!!

Since my port is such a huge part of my entire process of chemotherapy, blood being drawn, etc etc and will make life ALOT easier for me.. I decided it deserves a name! haha After some brainstorming and deciding against Hannah Montana II, MY PORT HAS A NAME!! WHITNEY, as in Whitney PORT!!! haha It's perfect!!!

For those of you who don't know who Whitney Port is, she is known for being on TV shows such as The Hills and The City, is a model, actress, and clothing designer. She has recently been employed at People's Revolution and worked for Diane von Fürstenberg.

It just worked out really well that her last name was Port... and I must give naming credit to Steve- he's the best and sure makes me laugh. But if anyone wants to try to contact Whitney Port so she can send me some awesome DVF clothes for honoring her that'd be really great!! hah :)

Pulmonary Function Test 3/25/2010

This was probably the easiest test thus far because it was non-invasive.. that's my favorite kind of day at the hospital. hah  My appointment for my PFT was at Shadyside Hospital and mom came along.  The PFT is important because the "B" of ABVD, Bleomycin, can adversely effect lung function.  This is rare, but important to monitor.  This PFT tells my baseline and I'll have follow-up PFTs throughout and after treatment telling if my lung function declines from the Bleomycin.  Like I said, the test was non-invasive.  I had to sit in what looked to be a telephone booth, use a nose-plug, and breath into a tube with different frequency and force.  First it was breathing normally, then quick and hard, then big blows as hard as I could.  I was then given two puffs of albuterol and repeated some of the tests.  Easy as pie and I was done!

Following the test mom and I stopped at Elbow Room and got a yummy lunch (we had "The GW"-- Brie melted over roasted turkey and granny smith apples on multi-grain bread with honey mustard dressing)-- a necessary thing to do after every appointment!  :)

Bone Marrow Biopsy 3/23/2010

O man, I was SOOOO nervous for this because anyone that I mentioned a bone marrow biopsy to said how painful it's supposed to be.  I was noticeably nervous when I got there and everyone knew about my skyrocketing heart rate the day before during my port placement so THANKFULLY I got some meds to take all my worries away.  Of course my veins were terrible from all my prior needle sticks so the "best nurse" got called to place my IV.  She was good.. but my veins are tiny and have been stuck so many times already!! Again, yay for my port!  She attempted one needle stick to my right wrist where a few tubes of blood was successfully taken, but unfortunately when they tried to push the demerol and ativan it was a no go.  Needle stick number two was successful in the left forearm. (they contemplated using my port after the first needle stick was a fail but decided against it since it was just placed the day prior and still needed healing) As soon as they pushed the drugs in my IV, I was a happy girl.

For the biopsy, I was turned onto my left side and my biopsy was performed on the back of my right hip bone.  Before the bone marrow cells were collected, the area was numbed with lidocaine injections.  First the skin, then deeper to the bone.  THIS STUNG, but only lasted a few seconds.  After that, the biopsy began.  It was an awkward pain..swooshing pain is the only way I can think to describe it.  It was over before I knew it, but little did we know the main event was about to begin......

Throughout the entire procedure, the staff joked about how often pharmacy students on rotation at the Hillman observe bone marrow biopsies and pass out.  Well they got a pharmacist to pass out today!! That's right, DAD PASSED OUT!!!  Mom and Dad were by my side the entire procedure and helped me through the pain and nervous feelings.  After the procedure was all over, Dad said he wasn't feeling good and decided he should sit down.. then he put his head between his legs..... then he felt the need to sit on the floor........... then he was OUT!  The staff tried ammonia smelling salts, pushing on his chest, and cold cloths on his forehead.  He finally woke up and was fine and dandy, but I promise he won't live this one down!  I have to say that it did distract me to take my mind off of the bone marrow being sucked out of my hip!  Thanks for the distraction, Dad!! :)

LEUKEMIA AND LYMPHOMA SOCIETY TEAM IN TRAINING, PITTSBURGH MARATHON-- DONATE!!

Hello to all of my "followers"!! I wanted to bring your attention to a link that I added to my website list on the right column of this blog called LLS TEAM IN TRAINING, PGH MARATHON--DONATE!!! It is a page that Meagan Kanski has set up to raise money for the Leukemia and Lymphoma Society. She is training as a part of the Leukemia and Lymphoma Society's Team in Training and will be running in the Pittsburgh Half Marathon on May 2nd in honor of all individuals who are battling blood cancers (INCLUDING MYSELF!!-- I am Meagan's honored patient hero for her marathon). Please help the amazing cause and DONATE DONATE DONATE!! This is Meagan's first marathon and I would love for everyone to support her and the great cause as much as possible!!

Port Placement!! 3/22/2010

THREE CHEERS FOR A PORT BECAUSE THIS MEANS NO MORE NEEDLE STICKS!!! YAY YAY YAY!!! Getting a port is soooo important when you have cancer. I will be getting chemo every two weeks, blood drawn often, and CT/PET/MUGA scans to monitor my heart and to see if the chemo is working. All of these require a needle stick, which can be painful (especially after multiple sticks that leave bruising and limit the number of veins that are workable for IVs). Instead of needle sticks, everything can happen through my port. They will numb the surface of the skin with lidocaine, then access my port through what is called a huber needle. No pain and easy as heck! Another important reason for the port is that chemo drugs can damage the arm veins and can be very painful, so it is safer to get the port and put all drugs through there. When it's all healed, my port will look like a little button under my skin, hardly noticeable at all with no limitations (though they say it may affect my golf swing, hopefully in my case it'll be in a good way- hah).

I went to Shadyside Hospital for my port placement. I had to be there at 6am and my procedure was scheduled for 8am, this meant wake-up at 430am and a pick-up from mom and dad at 530am. Soooooo early. As soon as we got there, the nurse got me checked in, my vitals were checked, and my IV was placed. I was set up in room 512 with my own bathroom, bed and TV to keep me and my family comfortable before and after the procedure. It was only a matter of time before my bed was wheeled downstairs to radiology which is where my procedure was done.

While I was in the holding room in radiology, the nurses assured me that even though I will be "awake" for the procedure, I would feel very comfortable without a worry. They first gave me a one-time dose of cefazolin to decrease any risk of infection. The doctor met with me about placement of the port being on the left side because they wanted to allow complete healing of my biopsy which was performed on the right side. They then moved me to the procedure room where I received fentanyl and versed for "conscious sedation." The combination sure put me in a happy place. Dr. Kevin McCluskey inserted my port with live x-ray technology for the placement. He mentioned during the procedure that my swollen lymph nodes (due to lymphoma) made the procedure a little more difficult. Another slight problem that we experienced during the procedure was when my heart got "tickled." This slight touching of my heart made my heart rate skyrocket instantly from 70 to 180. They gave me labetalol stat and this controlled my heart rate instantly lowering it back to 70. They called for an EKG stat but my heart rate was already under control by the time they got there and it wasn't necessary.


After the procedure there was very little pain, just a lot of awkward tightness and I was still verry sleepy from my cocktail of meds. I was brought back to 512 where my nurse, Patricia Sweeney took amazing care of me. She checked my vitals often, and answered any questions that my family had about the port and what to expect after. I was given an information packet about my port. My port is the "SMART PORT CT with Vortex Technology" made by AngioDynamics. The most amaaaazing thing about this port is that you can put CT contrast through it. (most ports/older versions do not have this capability and I would have to get needle sticks for CTs throughout my treatment) The packet came with an ID card, key ring tag, and rubber bracelet indicating my type of port. I feel like I need to name my port but I still haven't come up with a name- hah.

MUGA and PET/CT 3/19/2010

This should have been an easy day, but it didn't start off so great. Steve and I got to the 1st floor of the Hillman Center and all was well. We checked in with radiology and filled out some easy paperwork and waited for my name to be called. After being called, it was time to place my IV. After an hour, 3 different nurses, and 5 needle sticks, my IV was placed. I got 2 sticks in my right arm, one in my right hand, one in my left hand and one on my left wrist. I am terrible with needles to begin with on the first attempt let alone 5!! THANK GOODNESS I AM GETTING A PORT TOMORROW-- NO MORE NEEDLE STICKS FOR MEEE!!!

After the IV was placed, it was time for the EKG and MUGA scan to make sure my ejection fraction was good and to also determine my baseline to base other MUGA scans off of throughout chemotherapy to make sure it is not greatly affecting my heart. The "A" of ABVD, Adriamycin, can damage the heart muscle. This risk is mainly when the recommended maximum dose of Adriamycin is exceeded. It is uncommon that the heart be affected, but good to take precautionary measures. For this procedure, 3 milliliters of my blood was taken, bound to tin and made radioactive, and re-injected into my bloodstream. The scan took approximately 15 minutes once I was on the table. The results were within normal range within the percentages of 55-65%. This will be considered my baseline and tests during chemotherapy will be compared to this.

After the MUGA, I got my PET/CT of my entire body done. This is used to determine my stage of lymphoma and we will have the results in approximately 1 week. For this procedure I had to drink a mix of tang mixed with something that made it taste funny, get injected with a radioactive sugar substance, wait 20 minutes, drink another tang cocktail, and wait in a dark room for one hour completely still (if I moved a lot the sugar substance would settle in my muscles that are moving and the results of where tumors are located would be unclear). The PET/CT were combined into one machine and I was on the table for approximately 25 minutes zooming in and out of a cylindrical shaped tube. I closed my eyes, listened to Miley Cyrus who was playing on Lite-FM and pretended I was on a Kennywood ride. First they did the CT and injected me with contrast that made me feel a hot flash and had the sensation of peeing my pants, and then they did the PET. The contrast for the CT wasn't so bad this time-- knowing what to expect from my last CT helped a lot.

Before I knew it, the 5 hours of testing was DONE DONE DONE and Steve and I enjoyed a great lunch at the Cheesecake Factory! If you haven't noticed, I enjoy going to get a nice meal after every procedure and test I go through. It makes me happy :)

Fertility Consult @ Magee 3/17/2010

What better way to spend my birthday than at the Fertility Center at Magee Women's Hospital....

Dr. Marks suggested that this consult be scheduled because there is a slight chance that chemotherapy may affect fertility later in life. During my first appointment he mentioned that I had basically had 3 options:
1. do nothing-- chances are that with my type of cancer and type of chemotherapy that I am going to have (ABVD) that I will return to normal upon completion of my treatments (<20% risk of infertility post chemotherapy, some sources say 5% risk)
2. get Lupron injections each month for 6 months during my chemotherapy treatments-- The Lupron will force my body into menopause for the 6 months and put a halt to ovulation all together and in theory preserve those eggs to be available later in life. The theory with this is that cancer cells and ovulation cells are proliferating, and chemotherapy is not selective and can target both kinds these cells (as well as other cells- this is why there is such vast side effects to chemotherapy). So if you stop the ovulation, the chemo will hopefully not target the ovulation cells and fertility will persist after chemotherapy. This is not proven AT ALL through any clinical trials for my type of cancer/chemo but has been proven for other cancers and chemotherapies. My fear with doing this is exposing myself to even more drugs than necessary and the side effects (hot flashes, mood swings, bone loss) that coincide with menopause on top of the expected side effects of chemotherapy.
3. harvest embryos-- NO THANK YOU, NO THANK YOU, NO THANK YOU!


Upon going to the clinic I had my mind made up that with my age and stage of life (still in school, not married or currently planning a family) that either options 1 of 2 would be my choices. After the consult and a lot of thinking, I decided to do nothing and to tackle the idea of children when the time comes. If in the slight chance that I am infertile after all of this, adoption is ALWAYS an option. To have the stress of what cancer brings already is enough, to add forced menopause on top of that seems ridiculous at this stage in my life. It would be different if I were married and currently planning a family or if my cancer/chemo was considered high risk for infertility. My cancer/chemo is low risk and lupron is not proven at all.

Just as a side note- can I tell you how awkward it was being in the fertility clinic with all these other couples who I'm sure will be our next Jon and Kate Gosselins!? No thank you, get me out of here!!

Excisional Lymph Node Biopsy 3/2/2010

An Excisional Lymph Node Biopsy is where an entire lymph node is removed to determine exactly what kind of cells are present. In my case, the results of this biopsy was Nodular Sclerosing Hodgkin's Lymphoma.

For this procedure, I was completely out with general anesthesia. The procedure was done by Dr. Blaugrund at the Wexford Surgery Center. Advantages to going to the surgery center was that I didn't have to go through extensive bloodwork and pre-surgical physical that is required if I were to go to Allegheny General Hospital (the other location where Dr. Blaugrund works out of). Dr. Blaugrund's only concern with doing the procedure at the surgical center was that my lymph node specimen wouldn't get to the lab that he wanted it to go. To ensure that my lymph node specimen got to the desired pathologists, Dr. Blaugrund hand-carried the specimen himself. Can you imagine Dr. Blaugrund driving his car and my lymph node traveling in the passenger seat? Haha, makes me laugh when I think about it!

My parents and Steve came to the surgery center with me. When we got there we signed in and within minutes I was changing into a hospital gown and getting my IV into my hand. My nurse was so kind and I found out she was a Duquesne Alum! She was sure to answer any of my questions and tried to make me as comfortable as possible with a nice warm blanket. The anesthesiologist and Dr. Blaugrund stopped by to talk to me and my family before the surgery. Before going into the operating room, my anesthesiologist asked me if I wanted something in my IV to minimize my nerves that would make me feel like I had a drink. I took him up on this offer and it worked. I was free of nervous feelings when my family went back in the waiting room and I was wheeled into the OR. When I got to the OR, I was asked to move to the OR table. Once on the table, my anesthesiologist told me I would feel something cold in my IV and the last thing I remember was having an oxygen placed on my face. I WAS OUT.

I woke up in the recovery room where I spent about 30-45 minutes. I was given meds for nausea in my IV so I didn't feel sick at all from the anesthesia. Thank goodness! I was given some ginger ale and crackers and was happy as heck. My mom says I constantly said "I'm so happy" hah, I don't remember this at all. I apparently said it the whole ride home and when I got home too. Before I knew it I was on my way home with a Rx for Vicodin 5/500 Q4H PRN. We stopped at CVS for the Rx and Mom and Dad dropped Steve and I off at the apartment while they got us all Cheesecake Factory. I took a few Vicodin throughout the next few days to prevent any pain. I had minimal to no pain in the area surrounding the incision after surgery. This was mainly due to my nerves being affected in this area and to this day is still numb. I don't mind it to be numb, I'd rather have that than any pain. The doctor said that this is expected with the procedure and warned us of this before surgery. He said that the numbness can persist up to a year.

I got a phone call from Dr. Blaugrund on Friday March 5th with the results of the biopsy. I was diagnosed with Nodular Sclerosing Hodgkin's Lymphoma. Dr. Blaugrund's scheduler set me up with a follow-up appointment with Dr. Blaugrund and also scheduled my first appointment for me with Dr. Stanley Marks. The final appointment with Dr. Blaugrund went well but was a bit sad because I would now be passed onto the oncology docs. Dr. Blaugrund and his staff were incredible to me throughout my diagnosis process and I couldn't ask for any better care. I would recommend anyone to them for any ENT needs. :)

Fine Needle Aspiration Biopsy 2/24/2010

The FNA biopsy was quick and easy, but rough for me because I hate needles. Since we wanted to get the diagnosis process moving, I went to Dr. Blaugrund's partner, Dr. Srodes, for the procedure at UPMC Passavant Hospital.. Steve came with me and was amazing at keeping me calm. The FNA procedure consists of numbing the swollen lymph node area with a lidocaine injection, then 3 passes of a needle to collect cells that will be transferred onto a slide and read under a microscope.

First off, as a pharmacy student I know wayyyyy to much information. Needle gauges tell how large the hole of the needle is with an inverse relationship between numbers and size. So the bigger the number, the smaller the needle, and the smaller the number, the larger the needle. When the nurse was asking the doctor what needle size he likes to use, the response was needle gauge 21. All I could think at this time was that diabetic needles/any needles we commonly distribute in the pharmacy is either 28 through 31! So this means a nice big needle to collect my cells! Eeek! My heart was pounding!

Dr. Srodes numbed the area and we were ready to start. I asked him what I should expect even though I was numbed. He said I would feel alot of pressure and also asked me if I EVER STUCK A 9V BATTERY IN MY MOUTH!!? hah no, I never did this, but now I know what it would feel like. The biopsy felt like a jolt of electricity down my arm. This sensation was because there were so many nerves in the area and they were bound to be touched by the needle during the procedure. The nurse at the office was great and held my hand through the first needle pass. I was nervous and once again (like w the CT) I broke out into a nervous sweat. The nurse got me a cold paper towel for my forehead and wrist to cool me down before the next two passes and Steve went to the front desk to get me a lollipop :) The slides came out clear from the first pass, so we proceeded w the next two. Before I knew it, the procedure was over and it was only a matter of days for the results.

After the biopsy Steve took me to Panera Bread for lunch and shopping at Ross Park Mall after. We went to Kate Spade and found a bangle that read "HAVE COURAGE" on the inside that Steve bought for me. It's perfect and now goes with me to all of my appointments to remind me to stay strong. After Kate Spade, we made our way to Build-A-Bear and created a bear named "Beary O'Lucky" that Steve bought as well. She's green with shamrocks all over her, we put a green bow on her ear too. The bear doesn't go to the appointments, but is with me at home to help me cope with all the craziness that is now going on in my life. Steve sure knows how to make me happy and get my mind off of things after a long day of needle pokes to the neck. I'm so lucky to have him through all of this.

Fortune cookie

I went to PF Changs last night with my family to celebrate my little cousin's birthday... found my fortune quote funny and absolutely perfect..

"A CRAB WONTON A DAY KEEPS THE DOCTORS AWAY"

Bring on the crab wontons!!!!!! hah

1st Day at the Hillman Cancer Center

Today was my first appointment with Dr. Stanley Marks at the UPMC Hillman Cancer Center. The appointment went well and they scheduled ALOT of tests and such before chemo starts on March 31st.

3/17: Fertility Consult @ Magee
3/19: PET scan and MUGA scan @ Hillman Cancer Center
3/22: Port Placement @ Shadyside Hospital
3/23: Bone Marrow Biopsy @ Hillman Cancer Center
3/25: Pulmonary Function Test @ Shadyside Hospital
3/31: Appt w Dr. Marks and 1st Chemo Treatment (ABVD therapy)

I'll be getting chemo every two weeks for six months... I'll keep everyone posted on ALL updates!

PS We got some pretty awesome breakfast at Pamela's after the appointment! :) mmm Banana Walnut Hotcakes!
AND IT'S MY BIRTHDAY TOMORROW! yayyy

eww, but I'll get used to it :)

Soo I took off the bandage from my excisional lymph node biopsy tonight.. grossed me out so Steve helped me cover it again before bedtime (also wanted to avoid drooling in it tonight-haha). The scar is pretty small and I'm sure it'll heal up just fine. I have my follow-up appointment with my ENT tomorrow so I can get some feedback on how it looks, and if you're lucky maybe I'll post a picture or two.

I'll also be posting my experiences with my fine needle aspiration biopsy and excisional lymph node biopsy soon..


So far everything has gone so smoothly and I can't complain about one thing...Also, the support of family and friends has been so incredible and I consider myself lucky to have all of you! Thanks so much for all the prayers, gifts, cards, and great wishes-- you have no clue how much every single one of you mean to me. Thank you, Thank you, Thank you!!!

CAT scan 2/23/2010

The CAT scan was interesting.. mostly because I never experienced it before and didn't know what to expect. I was told to lay on the bed/table that would slide through what looked like the hole of a donut shaped camera. The CAT scan combines technologies of x-rays and computers to format many cross-sectional pictures of one's body. This was used to further look at the anatomy of my lymph nodes. I was set up with an IV and was told that upon injection of the solution I would feel a "hot flash" sensation, then it would feel like I was peeing my pants. And this was all true (I asked to make sure I wasn't actually peeing my pants- thank goodness I wasn't). The CAT scan itself only took about 5 minutes and the machine gave instructions for breathing and to stay completely still. The ceiling of the room had treetops and the sky pictured to make me feel like I was relaxing in the grass on a beautiful day or maybe I was in a spa. Nice touch, but I still broke out into a nervous sweat.The CAT scan images were put onto a CD instantaneously and I was sent back to Dr. Blaugrund's office with my results. The CAT scan indicated that not only were my collarbone and neck lymph nodes swollen, but my mediastinum (between my lungs) lymph nodes were swollen as well. This is a key indicator of lymphoma, and with these results we were able to eliminate other causes such as infection. (If it was an infection and the mediastinum lymph nodes were as swollen as they are, I would be hospitalized with severe symptoms.) With these results, our talk got a bit more serious. We discussed scheduling an excisional lymph node biopsy, canceling the trip to Orlando, referrals for oncologists, and accepting that my plans for the next year or so would change drastically.Words cannot explain how I felt, but the hardest part was yet to come.. discussing the results with Steve, my parents, family and friends. Up until this point I had control of mostly everything that happened in my life, I never imagined something like this would happen to me. It's interesting how cancer could change your whole perspective of what is truly important. I am in the process of finishing my last semester of pharmacy school, and I am scheduling rotations for the next year. Will I be able to do it all and graduate when planned? I'm not sure. But I do know that my plan is to take life one day at a time and if my schedule is set off by a year or more, it's not the end of the world. I'm ready and determined to fight this.

ENT appointment 2/23/2010

I met with Dr. Blaugrund today. Everything went smoothly and the staff at Metropolitan ENT Associates couldn't be nicer. My doctor examined my lymph nodes and decided to schedule me for a CT scan and a fine needle aspiration biopsy. Since Stephen and I were planning to leave on 2/26 for a vacation in Orlando, my CT scan was done right after my appointment and my fine needle biopsy was scheduled for the next day. We weren't wasting any time!

MedExpress 2/14/2010

I noticed that my lymph nodes surrounding my right collarbone and neck were swollen for about a week now. I went to MedExpress to get an antibiotic with hope that the swollen lymph nodes were a result of an infection that settled there. I was prescribed Amoxicillin 500 TID X10D and was told if they didn't go down in a few days that I should contact an ENT who would schedule biopsies. The ENT that was recommended to me was Dr. Blaugrund through Metropolitan ENT Associates.