Finally an Update

I haven't blogged for a while because there has been a lot going on. Here is a summary of what has been happening:

• Started having severe headaches - went to the hospital and was diagnosed with a brain tumor;
• The day after being diagnosed, I was hospitalized and had a MRI and CT of the chest and belly;
• Transported daily from St. Francis Hospital to the Reimen Center to receive radiation treatments - received 14 treatments in all;
• Underwent Gamma Knife procedure to reduce the size of the brain tumor - the procedure was to take only 20 minutes and ended up taking 2 hours;
• Started physical therapy at home and started to experience back pain;
• November 6, 2008: Started back on chemotherapy;
• November 9, 2008: Dr. Cuevas orderd a spinal tap due to back pain;
• November 10, 2008: Spinal tap completed;
• November 11, 2008: Spinal fluid positive for cancer cells;
• November 12, 2008: Met with Dr. Lloyd to discuss placement of port - the port will deliver chemo directly to the spinal fluid;
• November 13, 2008: Port procedure completed;
• November 15, 2008: Traveled home to South Bend, Indiana for Dad's 60th birthday party;
• November 18, 2008: Chemo at clinic to spinal cord;
• November 23, 2008: Morgan and I moved to new apartment on the ground floor (yay! no more stairs);
• November 24, 2008: Hospitalized due to high fever;
• November 27, 2008: Moved to Intensive Care;
• December 1, 2008: Admitted to hospital again for observation after having a fever and headaches on Saturday and Sunday;
• December 2, 2008: Admitted to ICU (again) due to high fever (103.9), headaches and difficulty breathing;
• December 3, 2008: Blood clots were found on my heart and lungs;
• December 6, 2008: Released from hospital;
• December 6, 2008: Day of the Beneft in my honor - could not attend but got to talk to people via a web cam;
• January 12, 2009: Chiropractor appointment - had a seizure while in waiting room - unconscious for about 45 minutes and transfered to hospital - released home with more pills.

Dr. Cuevas

Just thought I would let you all know I got a new Oncologist! Dr. Domke is the leading Hematologist in the state and has decided to dedicate his practice to that endeavour. Wheaton Franciscan has since closed the cancer care clinic at St. Joe' Hospital and has transferred Dr. Francis Cuevas out to the Reiman Center which is where Dr. Domke was based. The best part about it is the fact that Dr. Cuevas will be at the Reiman Center the entire week so I will no longer have to go to the hospital two days a week for treatment!!! WOO HOO!! I have also met Dr. Cuevas briefly and he seems great! He is a really nice guy who one of his specialities is breast cancer so I feel great going to him now! I have added his picture off to the side so you can see what he looks like.

Hospital Stays

Hello everyone! Sorry I haven't blogged in a while, but for those of you who know what have been going on can understand why. I'll go into that on the next blog. After the first and second round of chemo I had the normal side effects of the mouth sores, digestive issues and fevers. After the third and fourth rounds those side effects got to the point where I needed to be hospitalized.

I went to St. Francis Hospital for both stays, and unfortunately the first one wasn't very good. The first time I was hospitalized I went to the St. Francis Hospital in Franklin which just opened. Unfortunately they didn't have inpatient care at that point so I was transferred to the normal St. Francis Hospital and put on the cancer floor. The nursing care I initially received was HORRIBLE. I had a nurse who had been working there for four months! She had never drawn blood before and had me sitting in the room for 4 hours without even being hooked up to an IV!! I also asked for a pain pill at 8am when I arrived and didn't get it until 3pm! The only reason I got it is because my friend called the nursing supervisor to complain. Thank you Lisa! I was released from the hospital a couple days later and sent home. The doctor said that he should knock my chemo down by 25% but because I am 28 (seems to be working more against me than form me) he was going to give me the full amount of chemo and that I would probably be in the hospital again.

The second stay, was again at St. Francis. I was at my pre-op appointment with Dr. Mikkelson and looked so horrible that they decided either they were admitting me or Dr. Domke was going to admit me to St. Francis. I went through the ER at St. Francis and I wanted to scream! The ER doctor ordered a rectal temperature that made me scream bloody murder due to some of the side effects that I still had. So after Morgan took a half hour to get me to stop crying they put me in a negative pressure room because my white blood cells and red blood cells were so low. Once the results from all my tests came back it was determined by the ER doc and the hospitalist that I would go into ICU because my heart rate was over 130, by blood pressure would go from 99 over something, to 134 over something, back down to 88 over something. Plus my white blood cells and red blood cells were so low. Once I got to ICU, I couldn't love St. Francis more! The nurses there were outstanding! My only problem was that the doctor hadn't ordered any pain medicine for my throat which was one of the main reasons I had gone to the hospital in the first place. I was so frustrated with my situation that I finally hit rock bottom. I got back into bed and started crying and telling Morgan that I couldn't handle it anymore. I was done with treatment, that no matter what I did I felt worse and worse, that nothing was making me feel better. I couldn't do it. Morgan sat over me holding my head and rubbing my head for over a half hour. By the time I was done crying, the nurse had gotten an order for pain medicine which put me to sleep finally.

Once I got the pain meds, and I was in ICU for a couple days I got my second blood transfusion. Those freak me out pretty bad. I figure that my odds are pretty crazy to get IBC at my age that my odds of getting some disease from a transfusion are pretty good. Luckily, I haven't gotten anything from the two transfusions. I was also then moved to the heart floor where my friend Lisa was working. It was fun with her up there because she would come and hang out in my room with me. That had to be the most fun I had while in the hospital ever! Thanks Lisa! I was finally released from the hospital on September 1st. I still haven't gotten my appetite completely back, but hopefully that will come in time.

Tired

For those of you who have been following my blogging, sorry, I've been a little busy :) Over the past month, I've gone through two more rounds of chemo. That's right boys and girls, that means I only have one more round until surgery time!! WOO HOO! Then I have about a month and a half off of chemo while I recover from my surgery. Thank heaven for small favors right!

So, where did I leave off. After the first round of chemo, the side effects that can come, did. I got the mouth sores (which I guess I'm even more prone too because I got them even before I got sick), I got the indegestion and what we will call "stomach issues". My "stomach issues" have changed through the different rounds of chemo, but I'm just hoping they don't get worse. I haven't gotten sick as in throw-upy sick (is that a word??), but I have gotten nauseous a couple times here and there. Thank goodness for anti-nauseau meds!

The worst thing about the side effects of the chemo is the complete and total lack of energy! For those of you who have had a really good massage, you know how your body just feels completely weak afterwords? Or for those of you who just get so tired that your arms or some other part of your body feels like it weighs 900 lbs and doesn't want to move? That is how I feel ALL THE TIME. Gets pretty old! I was seriously lying on the couch the other night and woke up from a nap around 8pm. It honestly took me an hour to get off of the couch, go to the fridge to get some applesauce since I hadn't eaten since 3:30 that afternoon, and go back to the couch and finally eat the applesauce. I mean come on! I ended up sending a text message to my husband telling him that I seriously thought he might find my dying carcas on the couch because I couldn't move! Then when he finally got home, he put me to bed, but my stomach wasn't liking the idea of going to sleep. So I got back up, took some meds and grabbed a piece of bread to eat and layed my head on Morgan's stomach. It took me almost 30 minutes to eat the bread because although my head is saying eat, my body is say F**k you, that takes to much energy! First you want me to bring the food to your lips, then you want me to open your mouth, then you want to chew and swallow??? Who do you think you are??

Round 1 of Chemo

Going into all of this I really didn't know what to expect. I figured that my doctor's and nurses knew what was going to happen, but even though I knew that, I was still pretty unsure.

I arrived at Dr. Domke's office on Monday morning to get "hooked up" to my pump. The pump consists of a small machine that is hooked up to an IV bag filled with chemotherapy. The pumps purpose is to continuously give me chemotherapy over the entire chemo week. One of my dual pumps is accessed by a needle with something that looks like a butterfly on the end of it. The needle is connected to a long tube that goes under my clothes and the tube goes into what looks like a large fanny pack that has a long strap on it that I can carry. When connected, I have to carry the pump everywhere. And I do mean EVERYWHERE! Have to go to the bathroom? Here I go with the pump! Shower, yeah right - can't get the pump wet, so it's sponge bath time! Sleeping? Try doing it with something that sounds like it is taking your picture every couple minutes! Things get pretty interesting!

Anywho, I got connected to the pump with no problem and left the doctor's office. The next day, I had to go to the hospital location because my Oncologist splits his time between the hospital and his own personal office. So I went to the hospital on Tuesday and had to get the extra chemotherapy. On this day, they accessed my other port with another butterfly needle thingy with another tube connected to it. Through that tube, they hooked me up to an IV and gave me anti-nauseau medicine. They also have to give me these shots to be sure that my lines are clean and to prevent any blood clots. Man do those shots taste nasty!! From what I gather, not everyone can taste the medicine when it is injected. Another way that I am just lucky I guess! When you get the shot it actually tastes like you are chewing on plastic wrap that is trying to dissolve in your mouth. Pretty gross.

The medicine I get on Tuesday, Wednesday and Thursday consist of the anti-nauseau medicine, and then two syringes full of this "red stuff". One of the nurses at the hospital called in the Ruby Sisters, which I thought was cute too. Not really sure what each of my chemo meds is supposed to do or what the difference between the two is, I just provide the vein for the meds to go into. Have the syringes have been emptied into my system, I then get hooked up to a bag that is dripped into the IV that contains more chemotherapy.

Each of these sessions take between 2 and 3 hours. After I'm done I am usually feeling pretty good, but within a couple of hours, I am dead tired. 3pm seems to be nap time during chemo week. On Friday, I had to go back to the hospital to get a Neulasta shot. This shot gets put into my arm and is supposed to increase the production of white blood cells in my system. I need the blood cells so I don't get a infection, etc. but the chemo doesn't know the difference between good cells and bad and tends to kill them off.

Stay tuned for the week after chemo!

Purpose of the Port

As you can see in the pictures I've added, the port looks like a dual drum that the nurses at the oncology clinic can access for my chemo. Dr. Mikkelson made an incision right under my clavicle and made a pocket in the skin. She placed the dual port in the pocket and then had to make another incision that went deeper under the tissue to find a vein. She then threaded the cord that is attached to the port, through my vein so that the chemotherapy can go directly into my blood stream. This is also how I will have any blood drawn over the next couple of months of treatment.

I absolutely love the port. Although it looks pretty nasty, it saves my arms from getting poked and proded all the time. The best thing about it, is that it comes with a numbing cream that I can put on an hour before I get stuck, so I don't feel a thing. Ah, the marvels of modern science!

Surgery

So the nurse decided that she would let the pre-surgical nurses put my IV in. Obviously, after what she had just done, that was a good idea. Around 12:00 my transport came and after saying goodbye to my parents I was wheeled into the pre-op room. As I was waiting in the room I couldn't help but think, "Wow, didn't think I would be here this soon." For those of you who didn't know, at the beginning of May I had knee surgery to remove a torn meniscus. Sitting in the pre-op room again, was a little annoying, but I knew it was just the beginning.

The nurse came over and after a couple minutes, was able to get my IV started. HALELUEAH! A couple minutes later, my sleepy doctor came in to tell me what to expect, and the entire time I was thinking, "yeah, yeah, yeah, already heard this last month." When I told him I understood, he walked away and asked the nurses at the nursing station if they had any new magazines. That made me feel REEEALLLYYY GOOD!

A couple minutes later, Dr. Mikkelson came in to just go over the surgery. She said it wouldn't take too long, so we were going to get started. I got wheeled in, and moved on to the cold operating table and the last thing I remeber is asking the sleepy doctor if he found a new magazine. His answer thankfully...."No."

Now get this, I don't care what the doctor says or who they say it to, but I WOKE UP DURING SURGERY! I opened my eyes and saw the table over my head with the blue curtain. Seriously, maybe he was reading a magazine!!!

Next thing I know, I'm being woken up after the surgery is done in the operating room. They move me over to another table and tell me that they are going to sit me up and that I'm going to need to take a deep breath so they can get an X-ray to make sure the surgeon didn't knick my lung when putting the port in. Do you know how hard it is to take a deep breath. All I could do was cough. Not only did I just have a tube down my throat, but I just woke up out of a deep sleep. Who do you think I am??

Anywho, the Dr. got the X-ray and everything looked great. I got wheeled back to my room and no sooner did they put me in the room, than a tornado warning went into effect and I had to get wheeled back OUT of my room into the hallway with all of the other patients. That is where my parents found me. Boy was that fun! Stupid weather!