The Red Devil

As I sit and type this I am receiving my 26th chemo infusion.  In the cancer world that may not be a lot, but to me it feels huge.  Maybe one day I will look back and laugh at my naivete. 

 I am actually proud that I can sit and type this because last month that would have been impossible.  Things have changed in my chemo cocktail mainly due to the fact that the doxil I was getting, also know as the red devil, became too toxic for me to receive anymore.

The lovely red kool aid, aka doxil.




 
Doxil I must say has the reputation to be a very effective, but damaging chemotherapy.  It is a large liposomal (fat like) molecule and when it travels to the extremities it can clog the vessels there and break the capillaries. This actually kills the skin and causes blisters.  It also thins the skin and makes it very susceptible to damage and rashes.  Not to mention the obvious effect almost all chemo has on the bone marrow. Not everyone suffers from these reactions  My doctor has one patient that has no adverse side effects after 20 months of doxil!  He said it is probably genetics that plays a roll in who will suffer the side effects and who won't.  There goes my lucky genes again!

Things actually went down the wrong path after the first infusion.  I had terrible, and I mean terrible mouth sores.  By the second round my bone marrow was really beginning to show fatigue.  By round I mean I would have doxil and gemzar week one, gemzar week two and avastin week three, thus making one round.  So after round two my blood counts were so low I had to have two units of blood and my second neulasta shot to stimulate my white cells.  Round three started to really show doxil toxicity.  My hands and feet were red and swollen.  I had rashes everywhere with raw exposed skin and still mouth problems persisted.  I was miserable and oddly enough incredulous.  Why incredulous?  Well, I will tell you the same thing I told my doctor.  I thought I was above all this stuff!  Maybe like we all think we won't be the one to get cancer I also thought I wouldn't suffer the side effects.  I was strong and young (relatively).  I would never need transfusions or shots.  I was invincible.  Nothing like a little bag of liquid gold to knock you on your butt.  I got told...

And yet I had another round of doxil.  On May 6th I had what would be my last doxil and the rest of the month and the first part of June were just a wash.  I absolutely couldn't eat the first week.  Food was not just unattractive, it was down right abhorrent.  Luckily, I had taken the advice of the nurse at MD Anderson and when I had felt well, I ate well.  Like chicken fried steak well. I had been like a bear fattening up for my hibernation.  I dropped 8 pounds that week, but due to my previous well balanced diet I have even more fat to spare.  lol  By day 8, when doxil peaks in the system, all the symptoms became 10 times worse and I was basically bed ridden.  I would go from the bed, to the restroom, to the couch and back to bed.  Rinse, repeat.  Everyday.  Both my hands and feet had blisters and open sores.  My elbows even had sores the size of golf balls.  Every part of my body seemed fair game.  And I mean EVERY part. I had to go get a neulasta shot because my white count was so low and for the first time I went out in public like a true cancer patient.  I had to have Devon drive me and I wore my turban, sweats and house shoes.  I wouldn't put on any kind of real shoe if you paid me.  So why did I even consider another round of doxil?  Because I had a CT scan on the the 2nd of May and everything had shrunk 30-50%.  Something was working and I didn't want to mess with success no matter how painful.  But, I was not dumb enough to believe I could do this again  I had blood and protein in my urine and Dr. Messing said enough already.  All the bad side effects you see on the outside could be doing the same to my intestines on the inside.  I had to agree.  I needed a break.

So I continued my chemo with gemar and Avastin every week and the plan is to get a scan in July and see if this regimen without doxil works.  I really think it was the doxil putting the main hit on the cancer, but we shall see.  Meanwhile I am getting ready to go to Mexico with Devon, Stanley and some friends and I can't wait!  I just want to be somewhere besides this couch! 

So appreciate all the prayers and support.  May God keep all of us safe and healthy!

Best Laid Plans

Don't you love how life has this way of throwing you a curve ball? Dead battery before work, sick kids on a Monday morning. I don't care who you are you had one thrown your way. I had one thrown my way this February, but it wasn't just any curve ball, it was one in the dirt, waaay outside. Almost halfway through my front line chemo I found a lump in my neck. I wanted to be sick, I wanted there to be a reason for a swollen lymph node in my neck, but I wasn't sick and I knew there was probably only one reason it was there. When Dr. Messing felt the knot he was very quiet. He is not one to speculate and it would be futile to ask him to do so. But he immediately said he wanted me to have a biopsy that day and that said it all. So I received my chemo and after went over to HEB for a biopsy. And thus on February 12th I had received what would be my last front line chemo treatment of Carboplatanin and Taxol because my biopsy came back positive for Ovarian cancer. The pathology showed only one cell type, Ovarian Clear Cell. Good news? The other cancer types present on my tumor in November seem to be stopped by the chemo. The bad news? Clear cell just laughed at the chemo. Laughed in my face. I had to wait a long weekend to get a CT scan on Monday and Doctor Messing called me about 5pm that very day. First words from his mouth were, ”It's not good.” Getting straight to the point he told me there were several other cancerous lymph nodes in my abdomen and a thickening at the base of my intestines. The chemo didn't work. I had completed nine rounds, half way done and the cancer had spread. But, wait. That made no sense. And this was the most difficult thing to wrap my head around. I was clear of cancer. My clear scan in December said so. My CA125had been 425 after my surgery in November and now it was 27.5, normal and cancer free. Right? I was just doing chemo to make sure we got every bad cell not because I had active cancer. After my diagnosis Stanley would say over and over, “You will get your chemo and when you are done they will do a scan and you will be cancer free!” That was the plan and the way it was supposed to go. Honestly this news hit me harder than my initial diagnosis. I cried, we cried. I was extremely sad and Stanley was extremely mad. Things felt sooo out of control and for those very reasons we decided at that point to keep this news to ourselves. To take the rest of our family and friends on this roller coaster ride was in our minds just cruel. We knew there would a plan at some point. Some chemo or trial I would do to try and kill this beast, but until that plan was in action we felt like we were on this terrible collision course. The very hardest thing to do was act like everything was fine. I felt terrible lying to people and telling them everything was fine and to all of those that I did, I sincerely apologize. And if I appeared standoffish it was only because lying was such a difficult thing for me to do. I was afraid the truth was written all over my face. To say those were some dark days is putting it mildly.

We met with Doctor Messing on February 19^th and suggested we seek other opinions and possibly a phase 1 trial. He did not feel comfortable just pulling any drug off the shelf, mainly because the rate at which my cancer was growing was fast, scary fast. Dr. Messing said because of the “uniqueness” of my tumor he had sent it out for a Clearity Study. This company takes the tumor and makes a type of blueprint of the tumor at the molecular level and then provides a list of chemotherapy drugs which would be most affective at targeting the tumor. Individual targeted treatment is the therapy of the future and it is an exciting area of medicine!

At this point I am just going to try and give a summary of what went on the next few weeks. I don't want to write for ever and I doubt anyone is interested in every minute detail. So that Friday we met with Dr. James Strauss at Mary Crowley in Dallas. I had never heard of Mary Crowley before, but I have since found out they are well known in the area of cancer for their work in Phase One trials. Dr. Strauss did the usual check up, breath in breath out, routine and then cut to the chase. He did not think I was ready for any trial yet. He thought I should try a second line of treatment first, a three drug treatment of carboplatinum, gemzar and avastin. I did not understand why we would try carboplatinum again since I was probably platinum refractory, but I was very interested in gemzar and avastin. My cancer being platinum refractory means that it is resistance to platinum based chemotherapies. When we left Mary Crowley it was the best I had felt in a while. Although there are many people who only do trials as their treatment, for me it just feels like something you would do as a last resort. True or not that is just how I feel, so to be told I am not ready for trials made me feel so much more NORMAL.

On Sunday we headed to Houston to meet with MD Anderson the next morning. We met with Dr. Stood and he also made suggestions for second line treatment. He suggested topotecan and avasitin. There was that avastin again. Avastin is not a true chemotherapy in that it does not affect the cancer cells, instead it inhibits the growth of new blood vessels that the cancer would use to grow. I had been interested in avastin before this because my original tumor was very vascular and had used my own blood cells to to basically build its own blood system. That is why I had to receive two units of blood during my initial hysterectomy when the tumor was removed. That day we also met with the clinical trials department. They would take my case and present it to their board on Thursday and see what trials would best suit me. But, at this point I already knew what I was leaning towards. Any clinical trial presented would have to wow me. I just felt the chemo drugs being suggested to me for second line had more hope than the unknown.

 

I did not know what MD Anderson would suggest for a trial, but I knew that if I was to do second line treatment then I needed to get things going. So we met with Dr. Messing that week. He had also met with his medical group and they had their own suggestions. In the end it was decided that I would do a second line treatment of three drugs: doxil, gemzar and avastin. I would go to MD Anderson that next Monday to discuss their suggestions for the clinical trials. If I declined the trial then I would start my new chemo on that next Tuesday. Dr. Messing warned me that this three drug regimen was not one he would normally do and that it could be very toxic, especially to my bone marrow. But, hopefully toxic to my cancer as well! We made our trip the next week to MD Anderson, but we did not feel the trial they offered could do for me what this three drug approach could. So the next Tuesday, March 4th, I went back to start my new chemotherapy. I had to see Dr. Messing that Tuesday before I could get my chemo, yet he was in a meeting. As I sat in the little room waiting on him, his nurse Lynn came in and told me she thought my Clearity study had come in the mail. A few minutes later she brought me the results and there on the first page it read, Agents with Potential Benefit:

topotecan(suggested by MD Anderson),

gemcitobine or gemzar(suggested by Mary Crowley and Dr. Messing)

and

doxorubicin or doxil(suggested by Dr. Messing).

 

I felt goose bumps on the back of my neck and a chill go down my arms. OMG! All the drugs they had been suggested over the last weeks were a match for my tumor. This cemented everything. I knew for sure we were doing the right thing! And 20 minutes later I got my first dose. :)

The best-laid plans of mice and men

Often go awry

And leave us not but grief and pain

For promised Joy

Waiting is a Four Letter Word

I have not posted lately because well frankly, cancer is not very exciting or glamorous. It is just a lot of tests, chemo, waiting for test results, sleeping off the chemo hangover, losing your hair, looking like crap, more tests, oh then the waiting... So what have I been waiting for? Obviously, every week there is the anticipation that my blood count results are going to keep me from getting the chemo I need to defeat this, but I have also been waiting for over a month on my genetic tests. These results not only impact me, but my entire family. I was tested for BRCA1, BRCA2 and Lynch syndrome. It is difficult not to think about those tests on a daily basis. And so I wait.

Last week I had a colonoscopy in order for the Dr. to check my bowel on the left side where the cancer had adhered and also to take a look at a 2cm nodule on the colon wall that was seen on the CT scan in December. Let's just say me and that stuff you drink for the colonoscopy do no have a very good relationship and I found the whole process to be quite displeasing. Ha. For those that must endure this procedure often I have great pity for you. Everything looked great until they got to the ascending portion of the colon where the CT had seen the nodule and yes, there it was. Lovely. But, the good news is the doctor said it is not colon cancer and she thinks from its appearance that it is benign. Nodule has been biopsied for ovarian cancer and I will get the results in a week or two. Right now I will remain positive and just go along with my doctors visual “benign” diagnosis and for the actual results, I wait.

I have my own little ritual for chemo days. I always stop by QT to get me a big drink. I have my bag with everything I might need and my blankie that Kristi made for me. I have labs drawn and if it is not my day to see the Doctor then I go into the infusion room and get settled in. They have to wait for my labs to come back and make sure everything is within range so I can get my chemo. To me, just a formality. Until last Wednesday. My nurse came over to access my port and said, You barely made it, right on the cut off. What? Just last week my counts were good, great is actually what I was told. So what is she talking about? I asked for my lab results and evidently everything had tanked. Uggg. I had been extremely tired the two days before chemo and I guess my body wasn't lying. Specifically, my white cells had dropped to 3.2 and the the neutrophils, our bacteria fighting white cells, had drop to 1.5. Anything below 1.5 and there are three scenarios: 1.The Doctor must sign off on me getting chemo. 2. I get chemo and must take a neulasta shot to stimulate my bone marrow and 3. I don't get chemo and just get the shot. Now I don't have a problem with shots. I get stuck all the time, but it must be given the day after chemo and in my stomach. It can cause a variety of symptoms, but mainly bone pain and sometimes extreme. Sorry, I just want to avoid all that. My nurse said that next week my white count could drop even further and so I guess we shall see. And so, well you know, I wait.

Don't Look Now But...

I have hesitated saying anything on this subject because I don’t want to jinx things. I just finished my 5^th of 18 chemo infusions and well, I feel pretty good. Yea, I was scared to say it, but I feel real good! There, I hope stating it did not mess it all up. Not to say there are not side effects, some I did not quite expect. One they did not mention was this caustic stuff must come out of my body some way and unless heavily diluted with several liters of water it doesn't feel so good when it leaves. Need I say more. A big component they did tell me of was fatigue and since I am anemic that has already set in, but I think the body adapts to situations and even though my hemoglobin, hematocrit and white count are at their lowest since surgery, usually I can just take a little nap and then be ready to go again. I have a few of those days when I just cant get out of my woozy feeling, but those are very few. I asked Dr. Messing about my symptoms thus far and what I could expect moving forward. He thinks I will become even more fatigued as the chemo affects by bone marrow and my blood counts drop, but since I really have not had the bad nausea he thinks I will probably escape that symptom. Another dangerous symptom I luckily have not had is neuropathy of the hands and feet in which the fingers and toes lose feeling and that can actually be permanent. What he said that most surprised me was that some people actually feel good when on chemo. Whaaat? Of course one thing that helps is the steroids I get before infusions. But, Stanley and I have talked about how bad I actually felt the last three weeks before my surgery. He used to stare at me while I was laying on the couch and not because he thought I was pretty. Don't you hate it when people stare at you, especially when you don’t feel well? But, you know what? Now that I have that evil cancer out of me I do feel so much better! Have you ever been really sick? I mean really really sick. And it is only after you are well and able to function again that you think, Wow, I was really sick! Lol (if that made no sense then I apologize).

I am counting the weeks to my last chemo which is to be around the middle of April and I hope I never have to miss a chemo session. If my counts go too low I will have to get a blood transfusion or a shot to increase my marrow production of WBC's and platelets. Depending on how low they go I could possible not get my chemo and as weird as it may sound I want to get my chemo. I want to Kill Cancer! I get labs drawn every week and today they also drew blood for iron studies along with my usual CBC. They will send out the iron studies and based on the results possibly prescribed me something. I am not to just take any kind of iron on my own accord because this cancer loves iron so I have to take only what my Doc recommends. After my labs I went to in to get my chemo infusion. The infusion nurses have to wait on the CBC results. I always ask for a print out of my results and the nurse today was telling me how great my results are. What? I thought they were terrrible and she said, No, considering you are on your fifth session and then when we compare your counts to the standards set in the infusion room, you are doing great! Another feel good moment!  So you can follow along with my progress, here are my Normal counts from last year before I felt sick, my counts from today and the norms. I do not know all the low standards for transfusion and shots, the nurse only said that if my hemoglobin goes below 8 then I get one.

                          My Normal from 5/31/13       Today 1/15/14           Normal Range

WBC                                     7.7                                              3.7                             4.8-10.8

RBC                                      4.7                                              3.8                             4.2-5.4

Hemoglobin-HGB            13.8                                            10.6                             12-16

Hematocrit-HCT              43.1                                            32.7                             37-47

Platelets                              420                                            227                            130-400

Here is hoping my counts stay up and I get every treatment because so many people can't make it all the way through. I am aware that the effects of chemotherapy are cumulative and other problems could rear their ugly head. But, every good day I have is one day closer to being done. And so far the good outweighs the bad. You know we all have a bit of morbid curiosity, like staring at the wreck as we drive by, but if you came here out of morbid curiosity, looking for a wreck, then don’t waste your time looking cause that is not me! At least not yet. ha

Thank you for all your prayers and support. I have been beyond overwhelmed at the amount love I receive on a daily basis. You guys keep my spirits high! Love, Patti

Ohhh Fuuuuuuuudge!!

Probably if you looked up chemotherapy in the dictionary there will be picture of a bald person. I know from my experience it is the most asked question I get. Are you going to lose your hair? I had already looked up the most prescribed drugs for Ovarian Cancer and pretty much knew the answer, and then just to cement it, Stanley asked my Oncology nurse Lynn at our first appointment if I would lose it and she said, Absolutely, 100%. So there you go. Bye, bye. Hair today, gone tomorrow. And later when I went for my Chemo Training (yes, like going into war) the nurse made sure I knew it would fall out everywhere on my body. No eyebrows, no lashes, no hair!! So below is a link to my new appearance. I just want to make sure you recognize me in case we meet up at the grocery store.

Click to see the New Me!!

New day, new dawn, new year. Early on the morning of the first of January I am being accosted by another one of those abysmal night sweats courtesy of zero estrogen and chemo drugs. My hair was plastered to my cheek and I sleepily wiped the hair from my face. Ohhh Fuuuuudge! That hair was not attached to anything, in particular, my head! As I ran my hands through my hair there was more and more falling out. I fully expected to walk in the bathroom that morning and see bald patches everywhere, but as my hair continued to fall out over the next week I came to realize that humans have a lot of it!

January 3rd: So this stuff is everywhere and it is seriously annoying! Hair on my shirt, yuck. Hair down my shirt, tickles. Hair down my pants, awkward. How the heck did that get there? So now it is bad, real bad. Not a few strands anymore, but 10-20+. And what do you do with all that hair? It is so strange that something we covet so much we just throw in the trash and flush down the toilet. I look at my hand and see the long stands of hair, I did not know my hair was that long, wow! And I just casually toss it in the trash.

The drug Taxol can be blamed for this hot mess and I get Taxol every week for 18 weeks. Yea me!! Taxol halts cell division, which is important because cancer cells do not have the normal checks and balances that other cells have, and thus divide uncontrollably. And as you know chemo drugs are not selective in the cells they attack, meaning the drugs do not know the difference between good cells and cancer cells so the drugs affect ALL cells. Thus, cells that divide quickly are halted and die. Those mainly affected are the blood cells, the cells in the mouth, stomach and bowel, and the hair follicles; resulting in low blood counts, mouth sores, nausea, diarrhea, and/or hair loss.  So, all things considered, I do feel fortunate that as of today after four rounds of Taxol and two of Carboplatin(I get Carbo every third week) the main side effect I have is hair loss. I still have a little hair and wore a beanie to Costco today. And thankfully I still have my brows and lashes. Please, please, please Baby Jesus, let me keep my lashes! I am starting to see the side effects to the bone marrow and had some big drops in my blood counts today, but I will save the details of that not so juicy tidbit for later. So tomorrow when it is drizzling outside and you think you hair looks like &hit please remember those of us that just wish we had some. Lol

Love and thankful appreciation to everyone! Patti

P.S.  Today I want to give a little shout out to my special friend, Spell Check.

Diagnosis

Most stories start at the beginning, but where do you start when the beginning is unknown? Maybe it all started with conception, when my genetic blueprint was laid out, or maybe it all began with that first microscopic cancer cell and who knows when that was. Since I am just playing with a bunch of unknowns here, I will just start with November 15, 2013, my diagnosis of the Big C. I know I am skipping a lot of information, like how I actually made it onto the table that day, but I will have to get to that later. Surgery was “optional” and scheduled to last about 1.5 hours. I was to have a total hysterectomy of the uterus, fallopian tubes, ovaries and what was believed to be a 13cm noncancerous fibroid. Well, once the incision was made my OB/GYN found things were “not as he had expected.” I feel very fortunate that my Dr. at that very moment called the Gynecological Oncologist on call, Dr. Mark Messing. He came in and performed what they call a debulking in which they remove all visible signs of cancer. The 1.5 pound tumor had adhered to the bowel in about a four inch segment and luckily it had not invaded the bowel lining. Dr. Messing removed my appendix, which he said looked funny, scraped the pelvic cavity and took 8 lymph nodes for biopsy, starting in my pelvic region closest to the tumor and then up to my aorta. The doctors would tell my family that the surgery was a success! What what? Yes, a success, because they were able to remove all visible signs of cancer! Knowing what I do now about this invasive beast that is a great thing! Many times the cancer has spread to such an extent that it is considered inoperable and the woman has to be closed back up and then do chemo to shrink the tumors before they can do a proper surgical debulking. So what I came away with, 4 hours and two transfusions later, was Ovarian Cancer at least stage two with no VISIBLE signs of disease. I was automatically considered stage two because the cancer had spread outside of the ovary. I would have to wait for the results of the biopsy to find out if the cancer was greater than a stage two. And for those results I was to get a whole week of waiting. Lucky for me I was very distracted with trying to heal from what is considered major surgery and ladies and gentlemen, don't let anyone tell you different, it was major! Especially since they went in there and jacked around with all my internal organs. My OB/GYN would later tell me that I did not want to know what they did in there. Haha, probably not.

Moms have two important jobs. We raise a family and when we are not busy raising our family we “worry” about our family. So late at night, when we rest our head and close our eyes, that is when we are the best worriers. And I don't know about you, but I can be really good at that second job! The week after surgery medication would help me to fall asleep, but then as it wore off I would awaken to bizarre dreams and then let the worry begin. I just knew that there was no way this huge tumor had not invaded lymph nodes and other organs. How could a killer cancer so large not sneak its way in? And for the first time in my life I was met with my mortality. What will happen to my family and how long do I have... So it was with great trepidation that Stanley and I made our way to Dr. Messing's office that next week where he told us that of the 8 lymph nodes tested, 0 showed microscopic cancer! This means that I would stay a Stage 2! Now for the not so great news, my official diagnosis: Ovarian Cancer Stage 2c-Mixed carcinoma, predominantly clear cell carcinoma admixed with high grade papillary serous carcinoma and focal sarcomatioid features. What does all that mean? Well, I have three different cancer cells present, two of which, clear cell and papillary serous, are high grade which means they are fast growing highly metastasizing cancers. Is this good? Duh, no. And I will admit to going and looking up statistics concerning longevity with this type of Ovarian cancer. Yes, I did go look, once. And never again. My future does not hinge on Googled statistics. You are welcome to go look them up for yourself. Not saying I don't educate myself concerning my own disease, but the statistics are others stats, not mine. As for me, I am my own statistic. A statistic of one.