something soul crushing comes along. I am waiting for my husband to tell me to "curse God and die." *sigh* I had the total hysterectomy 5/25 and all of the carcinosarcoma was contained in the uterus (nothing had matastised, nothing in the lymph nodes).
Alas, the oncologist wants me to do chemo because this is a very aggressive and quick moving type of cancer. Yesterday I had the portacath installed near my right clavicle (sore, but nothing horrible) and today I spent the entire day getting "infused" with various highly toxic substances that kill off fast growing cells (like the lining of my mouth and my hair oh, and cancer).
I am doing 6 treatments, 1 every 3 weeks and they are highly intense doses. By the 2nd dose my hair will be gone. The thing that is bothering me is that I am doing this horrible thing to my body "just in case". And even then, there is no garauntee that it will find and kill any free roaming cancer cells.
I'm not as scared as I was, now I'm just ticked. Anyhow, I just want to keep track of what reactions/problems I have due to the chemo.
It has been 4 hours and nothing yet.
24 hours, nothin' (although I was horribly constipated from the anesthesia from the portacath installation)
...and yes, I am mad as hell at cancer and I am kicking it OUT !
7/22: for the past 24 hours I feel like I have been run over by a train - every muscle, every joint just aches horribly like a toothache; I take Tramadol 50mg but it's not relieving this pain. This is not pleasant.
7/23: I didn't make it to work today. I still feel horrible. I did lose 17 lbs in 2 days. good grief.
8/6: the 1 chemo treatment knocked my white blood cell count so low that I succumbed to a strep A infection in my portacath; had to get 3 shots of neuphronim (?) to boost my marrow's ability to make wbc's and just finished a week of daily IV antibiotics (thank God the port doesn't have to be removed and the infection is under control); btw, my hair started coming out in clumps this morning in the shower :-(
8/18: had to postpone the 2nd chemo until this past Thursday due to the infection (which is all better now); today is Saturday and I am feeling fatigued but no horrible bone aches yet; I will be dosing myself with Tramadol; my hair is mostly gone - Friday was "Hat Day" in my work group to show support for me (nice people)
9/4: I spoke too soon... again, I wasn't able to make it to work the following Monday. Didn't start feeling better until the Thursday after "chemo Thursday". The neuphronim shot is doing a good job of keeping my wbc stable. Due to the IV antibiotics and 20 days of amoxycillin I ended up with a horribly painful yeast infection. Dr. Cottrill prescribed fluconazole pills but it didn't touch it - bought some acidophilus pills and monistat 3 day treatment. It's all better now. I was putting neosporin on myself to ease the pain and then realized that it was an ANTI-BIOTIC ointment !! I am an idiot !
Went to see Dr. Cottrill again today and she said after the 3rd chemo (this Thursday) she wants me to consult with the radioligist. I don't want to, but I told her I would. She thinks I am handling the chemo really well. I guess I am just used to suffering. This past weekend was hellish. I just don't have a solution for the Jamie problem. No one does. I don't know what to do but I really can't take it anymore. I even threatened to get a motel room on the weekends. Dr. Cottrill wants to give me an anti-depressant. um... right.
9/12: had 3rd chemo on 9/6 - reactions not as severe this time; except right now I am having a hard time seeing, which is really weird. Great... now I'm going to be struck blind. I met with the radiologist yesterday (she was wearing snow-leopard print high heels so I liked her immediately). I am going to do the radiation therapy - starting in a couple of weeks for 5 weeks, 5 days a week. All the way to Lexington. She said I shouldn't have any really bad side effects but that everyone is different. Yesterday afternoon it was like I had been abducted by aliens - barium enima, had to drink floor polish, laid on a CT scan table for 30 minutes perfectly still while they drew on my body with permanent blue marker... it was crazy. That was to map out my insides so that when they radiate me they miss my bladder and most of my intestines and other important stuff.
Anyhow, the reason I finally said "yes" to the radiation treatments is because of the little voice in my head that told me 6 months from now if the cancer comes back I want to be able to say that I have done absolutely everything I could to stop it. Stupid little voice :-( Atleast I will get a rest from the chemo for a couple of months.
9/27: I had my first experience on the x-ray/radiation machine Tuesday morning - I had to lay flat on my back on a plank with my pants around my knees and my feet tied together for 30 minutes. Oh, and hold perfectly still. I had a hard time sitting up let alone walking after that. I asked her if it's going to be like this every time - "well, yes, but only this long 2 times a week. It should be only 20 minutes the other 3 times. See you tomorrow !" I have to figure out how to cope with this.
Actually, Wed. & Thu. treatments only took 10 minutes. Much better. No reaction yet, as far as I can tell. My brain is getting a little foggier, but that may just be me :-)
I haven't lost any weight in a few weeks. The defeatist jewish mother that lives in my head KNEW that something would happen and that the VSG would fail for me. The kind christian friend that lives in my heart tells me that everything will be ok. Me ? I'm not so sure, but I keep on doing the things that have to be done, come hell or high water or cancer. I should probably start exercising...
11/2: I finished the 5 weeks of full abdomen radiation on Tuesday. I have had diarrhea for the past 4 weeks (stayed home 4 days because I was in the bathroom more than I was working). The flesh under my "granny apron" on the right side is black (yes, black!) and the skin is kind of rotting off. I've been easing the pain by applying neosporin twice a day. The radioligy doctor looked at it and said I should be ok. There has been some pain on urination but nothing intolerable. I am tired. I think I have forgotten what it feels like to feel strong & healthy. On 11/15 I start the 3 internal radiations. Then after that I have to finish the 3 more chemo treatments. I think I need a vacation. A REAL vacation.
1/14: happy new year! I finished all of the radiation 11/21 (serious alien technology) and had a wonderful holiday season. A big thank you to my son's in-laws for hosting ALL of the family get togethers. I hope I can carry my fair share this year. The diarrhea from the radiation lasted 6 weeks altogether. I now have a lump behind my belly button. Dr. Cottrill ordered a CT scan, gave me a hug, and told me, "This is the kind of thing that makes my sphincter clamp down." oh boy. The CT scan results show that it is just a lump in the fat under the skin. She tried to withdraw some fluid thinking it was an abscess but only got a little blood. She says we're going to leave it alone for now and if it continues to grow and it becomes uncomfortable she will remove it. I said,"But if it's not cancer, it's not your responsibility." And she said,"YOU are my responsibility." wow, I really like her. I had my 4th chemo this past Thursday and the neuphronin shot on Friday. Once again my bones ached and I lost 8 lbs. I can do this.
Okaaay... just got a call from the oncologist - the blood she took from the lump behind my belly button showed cancer cells. She is scheduling a PET scan to see if it has spread through my body. If it has, surgery is unnecessary. If it hasn't, she'll remove the tumor. I really hate doing this to my family.
1/29: the 4th chemo resulted in boils... in my crotch. The largest one (about the size of a deck of cards) had to be lanced. I cried like a baby and then Dr. Donaldson packed it. That's when I started swearing like a sailor. Extremely painful. They gave me a script for percocet and sent me to the Infectious Disease folks again - 11 days on IV antibiotics (oh, and it was a MRSA staph infection too) and 10 more on sulpha by mouth and daily repacking of the boil (the 1st time was swearingly-awful again, but each time after was ok). I have started myself on the Monistat 3 anti-yeast stuff and acidophilus pills because I don't want to go through THAT again. And the PET scan? That showed that I do NOT have cancer anywhere else except in that lump behind my belly button. Praise God! I am getting that, along with my belly button, removed on Feb. 11 and then Dr. Cottrill wants me to do 3 more chemos. I don't know if I can.
This is all so scary. Oh, and that 5 weeks of radiation with 6 weeks of diarrhea? What a waste of time, money, pain, and suffering that was! All it did was tick off the cancer. sheesh!
2/15: I had my belly button removed on Feb. 11 - there's a 4 inch vertical incision where it used to be. Dr. Cottrill was very happy with the tumor - it was very self contained, no outshoots, about the size of a hockey puck, and she removed it and the surrounding fat (omentum) and the belly button. It's closed up really well (she just used that glue stuff to cover it), She's still talking about me doing 3 more chemo infusions. I think at this point I am more afraid of what the chemo might do to me than any stupid cancer.
2/28: I am back at work! whoo hoo! I spoke with Dr. Cottrill on 2/26 and she wanted me to start a different chemo regimen: 3 days of infusion every 3 weeks of ifosfamide. This chemo has very serious side effects for 50% of patients: hemorrhagic cystitis (could bleed to death from bladder, but there is a drug to counteract that) and neurotoxicity (dementia & psychosis up to coma & death). After talking with my husband and praying, I have decided to not do this chemo "just in case" I have cancer. I will be doing CT scans every 3 months to look for any cancer and if it comes back, I will reevaluate that decision. In the meantime, I am going to get busy living!!
God has been my comfort and strength through all of this and I thank Him for loving me.