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this is such an epic journey

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Singing The Song

I have been waylaid, struck down, undone, attacked, freaked out, scared to death, gutted like a fish, and this was just last week. What does next week hold? Thank You Father for not letting me know the future!   Two weeks ago I was diagnosed with uterine carcinosarcoma ("unique, rare, and extremely aggressive cancer"). Heck... I've been having these symptoms for 1.5 years. *gulp* So... enlarged uterus and post-menopausal bleeding is a symptom of something really dire. Well, la tee da.   Last Friday I had a total hysterectomy (done laparoscopically with the DaVinci robot) and have been home since Saturday. Bam! Now my VSG scars have 5 matching little sisters :-) One of them opened up this morning and is leaking fluid. Bam! The results from my lymphectomy are in but the doctor isn't and the receptionist won't tell me the results without the doctor reviewing it first. Bam! He won't be in until Friday. Bam! Bam! Bam!   Yeah, so right now I feel like I've been beaten with a baseball bat and the hits just keep on coming.   I will probably have to start doing chemo & radiation (so much for my hair falling out due to VSG !) but the prognosis from the surgery was good - it looks like all of the cancer was contained inside the uterus.   So there are much scarier things to have to go through than the VSG surgery. My originating blog was a song about fear. Maybe I *can* see the future! And what am I afraid of now? I'm afraid of leaving my family.... they will be so hurt. I have to find a residential program that will take my grandson. I have to update some "how to" documentation for my husband. In other words, I have to get my affairs in order. I am not afraid to die because I know Jesus has "prepared a place" for me.   Then again, I am fully prepared to continue living too   Update: just found out from the oncologist that all of the lymph nodes they removed are cancer free. WOO HOO ! :-)
Spatters3

Spatters3

6
 

Just When Things Start Looking Up....

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.
Spatters3

Spatters3

4
 

get thee behind me !

4/22/13 : Time to start a new blog. One without chemo or radiation or surgery :-) It feels like it has been a long time since February 11 but it's not even May yet. Spring has sprung here in the bluegrass and it's such a balm for my spirit. Life abounds! I have been busy living - my strength is back, I'm even doing a bit of morning stretches and more walking. I'm soooo out of shape! I also haven't lost any weight in a few months but I know how to make it happen. I have to stop eating the goodies at night with the kids, unless it's a protein snack. We're planning on driving down to Florida in Julyl to see my family. Need to find a house to rent (with a pool!) that isn't a ridiculous price. I was going to drive down by myself but realized that my husband just couldn't handle the kids on his own for a week. He is 70 and just can't do it anymore. I am 56 and *I* can't do it anymore either! hahahaha oh well, together we manage.   7/26/13 : Right before we were to leave for Florida (what a fabulous 2 weeks!) I had a sonogram from my primary care physician because I had a pain under my right rib cage. He called me that evening and told me I have gallstones for sure but that there was what looks like a lesion on my liver that he was concerned about. I was scheduled for my post-cancer MRI the following Tuesday so I mentioned that to the oncologist. Right after getting the MRI, the oncologist was able to review the results and her verdict is that I have a tumor growing between the top of my liver and my diaphragm (which is why it hurts when I yawn or take a deep breath) and it is in the worst place possible and is inoperable. We both cried a little and she said she would talk with the radiologist about perhaps using targeted radiation to shrink it. So what did I do ? Heck, I went on a 2 week vacation to the gulf side of Florida :-) Had quite the time, although I did slip and fall on my right leg (water + tile = hazard). After the fall, my entire right leg started swelling and it hurt. Didn't stop me from having fun with my family. When I got back home I told the oncologist about it, just in passing, and she ordered a "doppler" (I guess it's just a sonogram) and the vein specialist found that I have massive amounts of blood clots in my right thigh. Now I have to inject myself twice daily with blood thinners (lovenox) and in 5 days start taking cumadin and keep my feet elevated all day long. The doc said I am very fortunate that I am not dead. See ? Cancer is NOT going to kill me... something stupid like a blood clot is going to get me ! hahahaha Anyhow, I have an appointment next Tuesday with the radiologist. We'll see what she can do and if that doesn't work, I will find someone who does know how to remove this "inoperable" tumor. I am fully prepared to die just not right now. God is good all the time.   8/21/13 : The results of the 2nd opinion I got at the Markey Cancer Center at University of KY yesterday weren’t good. My case was reviewed by a panel of cancer researchers and surgeons (among the best in the country, I hear). The large tumor on my liver is not alone – I have many tumors growing in my abdomen. So, there will be no surgery and no cyber knife radiation. The liver specialist at UK is going to discuss what kind of chemo would work on this type of cancer with my oncologist (he even told me congratulations on having such a rare and aggressive cancer) but that would just be to slow their growth. I’m not sure I am going to do chemo. If I could make this all go away, I would.   I am very thankful I have had all this extra time to get everything in order.
Spatters3

Spatters3

4
 

Choosing The Song

Since this is really the most daring and scary and thrilling adventure I have ever been on, it deserves a theme song. "Free Bird" is just too melancholy. "Amazing Grace" ? "How Great Thou Art" ? hmm.. maybe this needs a new song.   Fear was the drink that filled my cup yet thirst drove me on to partake. I emptied the bowl and held my breath waiting for something to break. All that I dreaded did not come nye, no demons of hate and guile. Just my own little face looked back at me with a wink, a nod, and a smile.   Yes, I have always been my own worse enemy, critic, what have you. Well, that has all been figuratively and literally changed with my VSG. This is going to be grand!   I want to use this blog as a recorder of my physical state but I think I will also have to use it for my spiritual, psychological, and emotional state. not hungry (this is good. this is bad - it means I will have to think about what I eat. ok... this is good)
my daughter had to come rescue me today and took J & R for the weekend (2 grandchildren we are raising); thank you sweet daughter; J is severely developmentally delayed and my spirit broke - it just gets to be too much
the laundry needs to get done but no one is doing it. hello ? didn't you hear me crying and swearing about it this morning? *sigh* guess I'll do the laundry
it's so quiet in the house
am I losing it? hahaha... I punned myself
Spatters3

Spatters3

4
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