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.