Wednesday, December 30, 2009
I get a call from the Chemo Hospital yesterday-
"Peggy, this is Nurse Linda, you missed your infusion appt. today and you never miss appointments."
Me: "I'm no longer on the every week chemo, so that appointment should have been deleted."
Today Becky, my oncologists Nurse calls me and tells me I missed the appt. I relayed to her that I AM positive Dr. Lo and I discussed that I was only getting an every other week chemo infusion. did she change her mind or mix me up with another patient?
So, I basically am back at the frickin' freakin' hospital every week for chemo. I was enjoying the idea of every other week, and to hanging onto my new-found energy.
I'll never know for sure if, once again, there was a communication breakdown and I "misunderstood" Dr. Lo or if I dreamt the whole conversation and made up my own schedule. It pisses me off. Because I am not clear with her, I ask and confirm her answers ALWAYS and I KNOW she said every other week, to which I replied, Yippee, or yea, or something to that effect.
Wednesday, December 23, 2009
Spoke with my surgeon, Dr. Shoup - Loyola, to let her know of my trip to see the Surgeon that trained HER. She'll call him and discuss my case and his findings as well.
I also got clarification from her regarding the "Am I a candidate for surgery to remove liver tumors or not". It was my understanding that, per the last Loyola team meeting, I was NOT a candidate. I came to that conclusion based on the fact that it wasn't presented to me as an option, only TheraShperes. Dr. Shoup explained that Theraspheres was presented as an optional treatment because it wouldn't "harm" the liver should surgery be done down the road.
Dr. Shoup also stated that I "could" have surgery but it is a matter of "should" I have surgery.
I'm not entirely clear on the reasons why I should not have surgery but here are some:
- my tumors are on all lobes of liver, if all were cut out, not enough liver left to survive
- if only one side of liver operated on, that leaves other tumors, meaning not "cured"
- the liver surgery could end up compromising my ability to receive chemo and can also effect kidneys
I hope to get more understanding on the risks/benefits (although that is ALWAYS unclear) from my meeting with Dr Bertram at Northwestern today, and from Dr. Fong.
I saw Dr. Lo, my oncologist, yesterday at chemo and brought her up to date on my other consultations. I told her my continued frustrations with communication, and that as a patient, I may hear "the bad" news and not the good, or that if a limited amount of information is told to me, I will interpret and assume a host of other things. So I asked her to make sure she gives me more and clearer reasons for any team opinions and options presented to me so I can better process it and make decisions. I explained to her that I'm trying to get at much info and understanding as I can while my energy level and brain function are Good right now - while my chemo regimen is lighter, I may very well fall back into fatigue and Chemo Brain and don't want to be in a further position of weakness when making decisions on my care. I think she "got" it.
So my Angel Prayer Warriors, finish your shopping and gift wrapping and enjoy the time with your family and friends this week. As always, I thank you from the depths of my heart for all your support, prayers and good vibes.
Wednesday, December 16, 2009
You know when you have to deal with annoying but necessary bureaucratic procedures and phone calls? Like tech help for a computer problem and you go through 27 layers of "If X Press 1" until you finally reach a live body....It's really frustrating, highly time-consuming but you just know, that in order to get resolution, you need to get your mind all set that this is going to be a long phone call and very frustrating.
So, after my rookie attempt at getting the ball rolling at Sloan Kettering, Dr. Miller, my connection to Dr. Fong (liver surgeon at Sloan) heard my tale and emailed Dr. Fong. Dr. Miller gave him my case background and Dr. Fong replied that I should call his office to get an appt.
It was NOT the general Appt. Number, it was Dr. Fong's Office Number. Yippee! I'm behind the Iron Curtain and I have the email trail to prove it!
So, first thing Monday morning I call THE number at Sloan Kettering. I was leery, did Dr. Fong give me another general number and I'd still have to maneuver my way through the appointment labyrinth? I left a message and moved on to my next phone call - Northwestern Hospital, for an appt. with the surgeons to get their opinion on my case.
Now, back to my opening statement that "something beautiful has happened in the past 48 hours"...(I know, I know, it takes me a while to make a point):
They called back. The SAME day. Before Noon, in fact.
Terry from Dr. Fong's office said the magic words "You're approved and fax over every surgical, chemo, blood and pathology report since your diagnosis. Then we'll schedule the appt."
Linda from Dr. Beltram's office at Northwestern called to schedule surgery consultation for next week.
The cherry on the cake is that instead of having to go through the Loyola records department to get copies of all my records, my call to the Cancer Center found me connected to Nurse Jimenez, who printed everything for me and left it with the Security Guard for me to pick up last night. What an Angel! That saved me time folks, the Records Dept. is a black hole and I told Nurse Jimenez I just didn't have the leisure of time to wait on those records. She is getting some thank you treats delivered by me today!
So, the past 48 hours was a blessing of things coming together; things falling into place without so much angst and energy and worry that it won't all work out the way you want it to and NEED it to.
It may seem small, but phone calls answered in an unusually timely manner, a kind Nurse that did me a huge favor, the family friend that reached out to connect me to a highly reputable surgeon.....I so appreciate getting a 2-day feeling of peace and satisfaction amidst the constant highs and lows of cancer.
So, don't take it for granted if you have a run of things "falling into place"...there's usually someone else involved helping you along.
Sunday, December 13, 2009
I meet with Dr. Benson, oncologist at Northwestern - they say chemo should be continued, Theraspheres not recommended 1)not enough stats that it would "prolong life" and chemo has more evidence of that and 2) my tumors aren't vascular- that people tend to do better on targeted therapies if there tumors are vascular/lots of blood supply. It is also mentioned that, contrary to my current cancer team (onco, surgeon etc) that I AM looking like a candidate for liver surgery.
As exciting as that sounds - and Northwestern surgeon emphasizes that surgery is "the cure" to my disease, my current team has yo-yo'd on surgery and it's currently off the table. Add to that, Northwestern says that there is an optimum window of time to have surgery, when I'm on chemo break (I JUST re-started chemo this week) due to toxicity etc...
So now what do I do? I need to consult with surgeons at Northwestern for detailed opinion etc...do I go back to my original surgeon and share info? Now, does it come down to each surgeon's skill and ability, not just if I am a candidate? Until I know that Northwestern surgeons have thoroughly evaluated my PET Scan, I will not assume I am resectable right now. From my research, it appears that optimally, there are 4 or less tumors on the liver, though a very skilled surgeon may take on a case with more tumors.
I have a lot of tumors, don't know the number - though the Pet Scan in early November revealed that they weren't real "hot", several were "calcified" and not super active. That may be a factor in ability to do surgery, I'm guessing.
How do you decide? Dr. Miller, a dear friend of my family set the ball in motion for me to get an appt. with Dr. Yuman Fong- liver surgeon at Sloan Kettering, said to be the best....well, I was toltally screened out by my initial call however, Dr. Miller emailed Dr. Fong about my case and got a response that I should call directly for an appt- hopefully the number he gave is behind the Hospital's Great Wall of China/appt Screening Police.
How the heck are we to make decisions on our treatment when answers are so diverse????
there's sooo much more I could write about everything swirling around this next phase right now, but you'd be here for hours...will keep you posted.
Monday, December 7, 2009
Hopefully, side effects won't be as drastic for now, since I'm on a lighter poison regiment.
It's been soooo great having energy and appetite, although I have become a locust - my mouth was sooo deprived of culinary pleasure, now it just wants food ALL the time, even when I'm not hungry!
Will reschedule the TheraSpheres. I need to stay on some chemo so cancer doesn't return. Doing nothing will GUARANTEE the return of the Monster.
Have a Great Week!
Thursday, December 3, 2009
Wednesday, December 2, 2009
It's very hard to constantly create the "Hope" vibe.
After the appointment Lee & I are having dinner with Tim and Julie - always a great time with wonderful, dear friends.
I am feeling really really good. More energy than I've had in months & months. Chemo really does knock you for a loop. My hair is starting to grow again too!
I'll report back on the Dr Benson meeting!
Wednesday, November 25, 2009
- Met with Dr. Malmais today - an Interventional Radiologist at Loyola - to discuss the recommended treatment of Theraspheres.
Kelly, the Nurse Practitioner went over all the procedural aspects, which I did research on-line, so nothing new or surprising there. It is a fairly "complicated" procedure in terms of prep, determining if I am eligible for the procedure per certain tests, blood work, etc.
What I took from the meeting with Dr. Malmais:
Because I responded well to chemotherapy, I am a good candidate for Theraspheres.
This treatment is also used for people who did NOT respond to chemo.
Expectations: 4% of patients have a "Complete Response" - tumors eradicated
60% of patients have a "Partial Response" - some tumor shrinkage/eradication
The balance have No response/or stabilization
In order for me to be "cured" - all tumors gone - surgery is the goal. At this time, I am not a surgery candidate, and I may never be. My tumors are on both lobes of liver, some are too close to a hepatic artery, which makes it too dangerous for surgery/tumor removal. There is a high recourrance of liver tumors...hearing this reality upset me deeply.
It's a slippery emotional slope for me to want Honest Answers, percentages, and anything to do with "survival" and prognosis. I did get very upset at one point and left the room to get myself together.
How do I strike the emotional and psychological balance of Reality, practicality, possibility and being "prepared" and not kill the "positive attitude" everyone tells me I must maintain in order to "beat this"?
I am very pissed off about the "multiple options" I was told I had. I tried to get the Doctor to give me an idea of what my multiple options are. (Surgeon and Oncologist have uttered this statement to me several times when I ask about the "what-ifs")
If this treatment does not produce X result, them what?
"chirp, chirp, chirp"
If A, then B. If X then Y. That's what I was looking for but I have not received. I know there are no absolutes, I know we must see how I respond. But don't tell me that not one of the Doctors think about or have a Plan B.
So I guess my Multiple Options (said with dripping pissed-off sarcasm) are: Do the Theraspheres or Don't Do the Theraspheres.
As of today I plan on doing them of course. I will try those options that give me a chance.
I have my meeting with Dr. Benson at Northwestern next week and will try and nail him on my "Multiple Options" mystery. On the one hand, I hope he recommends the Theraspheres treatment as well, so I am not faced with confusing, disparate treatments. I am kind of expecting that it will be the same, but will be interesting to hear my 1st Second Opinion.
Lest this sounds like the ultimate downer of a post, I was at the Uptowon Shop getting a hostess gift yesterday and the girls asked me how I was doing with chemo etc...A woman shopping overheard and told me her Sister had colon cnacer and did Therasphere treatment 6 years ago and is doing very well. From my on-line reading, this is a promising treatment...
My prayer for the next part of my treatment journey: Please Oh Please Let me be the miracle, let me be the 4% Complete Response.
Tuesday, November 17, 2009
1. Last week, my college friend, Laurene, was in Chicago for business trip. She taxied from the Loop out to Maywood to meet me at Chemo and spend time with me. Chemo was cancelled and she, my Mom and I had a great lunch at the Marion Street Cheese Market in Oak Park. We haven't seen each other in a few years, but, as always, we easily fell back into an effortless camaraderie - catching up on kids, work, life etc.
2. On Saturday, my sister Katie and I drove up to Lake Geneva, WI to meet Mary for lunch. Mary is a friend and colleague of Katie's and a special Prayer Warrior of mine. She always shares thoughtful, encouraging, loving support via this blog. I was so excited to meet her in person and she's every bit as beautiful in person as in cyber-world. She is my new Present and Future Friend!!!
3. Early Sunday evening, as I just lay down to take a load off, I hear a knock at the door and Lee call me. I was thinking it might be a neighbor and I wasn't in the mood to visit. I reluctantly get up and who is standing in my living room? Javier Lopez - a friend I knew over 20 years ago when I was a student living in Madrid, Spain. He was in Chicago to attend a funeral and was trying to look me up - our phone is unlisted. He googled me, found this Blog and showed up on my doorstep. After reading about my Cancer, he made it a point to pay me and my family a visit.
So, Christmas came early for me. God continues to show me the absolute beauty of the people around me, even those on the periphery.
I continue to be blessed 1,000 times over. How do I compete with that? How do I ever begin to bring this abundance of love back out into the universe? If you have an answer, PLEASE let me know!!
Friday, November 13, 2009
No more chemo- it has gone as far as it can go at this point - will gain no more from it
TheraSpheres- injection directly to the liver tumors to help further shrink tumors
Surgery - Not an option at this point until more tumors are shrunk/eradicated
I am pursuing 2nd opinion with Dr. Al Benson at Northwestern.
If for some reason I decided against the therashperes, then they would put me on a different chemo cocktail and see if that further shrunk tumors, but I will pursue these other treatment options.
For nearly 8 months, give or take some breaks due to hospitalizations, I have gone to Loyola Cancer center EVERY WEEK for chemo and DR. appts. It will be kind of weird to not have that weekly routine.
Also, even though chemo is poison and while it's good for tumor-shrinkage and BAD for the rest of your body, I feel scared that it will no longer, at least for now, be infused in me. It's run its course. I've responded very, very well to chemo, but time to take a break.
On the bright side, I gained 7 Pounds in the last week! I had an eating orgy last weekend - Benihana and Pappadeaux, I have to start weaning myself from the bad fattening foods and get better foods in my system. I need to figure out how to go from Skeletor and not be a tubbo!
Saturday I have an outing to Lake Geneva with my sister and her friend Mary, who I can't wait to meet!!!!
Have a Blessed weekend my Prayer Warriors....you ALL can take credit for my progress and for any blessing I have received in my Cancer Fight...
I hope you all can truly believe what Your commitment of prayer in my name has done for me. I am proof of what the power of prayer can do.
Tuesday, November 10, 2009
I thought the following post sums it up nicely: Thanks Rob
As I remember my many friends here in this community I am overwhelmed by what we collectively face in any given week.
This week we will undergo surgery to reverse an ileostomy. We will stand by the hospital bedside of a mother in Italy, and a brother with bone mets. We will recover from surgery and regain health.
This week we will report for radiation and Chemo, for Oxy, Irinotecan, 5FU, Avastin, and Erbitux in various combinations.
We will suffer the side-effects and mitigate them as best possible with lotions, pain-killers, anti-emetics, and other tricks.
This week we will be PET scanned, CT Scanned, Bone scanned, x-rayed, scoped, and blood-tested every which way. We will wait for results. We will share and celebrate the good news and we will share and lament the bad.
This week we will search for new doctors and solicit second opinions. We will consult pain specialists. We will research new treatments and discover new possibilities. We will adjust to new realities and hope for better days ahead.
This week we will accompany our loved ones with cancer to various appointments and we will continue to walk with them through the ups and downs of the week.
This week we will be massaged and accupunctured. We will receive healing touch and reiki. We will meditate and pray, we will celebrate birthdays, and we will juice!
In whatever it is you face this week, I wish for you...
"Comfort on difficult days,
Smiles when sadness intrudes,
Rainbows to follow the clouds,
Laughter to kiss your lips,
Sunsets to warm your heart,
Hugs when spirits sag,
Beauty for your eyes to see,
Friendships to brighten your being,Confidence for when you doubt,
Hope in times of despair,
Courage to know yourself,Patience to accept the truth,
Love to complete your life.”
Saturday, November 7, 2009
NO NEW cancer growth seen in the body; no growth of liver tumors.
I will get these scans sent to Dr. Benson at Northwestern for a 2nd Opinion and the Loyola Team will meet in the next week or so to discuss surgical/treatment options.
This next phase of treatment I fear will be wrought with confusion and anxiety and "Which way to go" in terms of making choices and decisions on treatments. What will be in MY hands? What is out of my control? Will the treatments be effective, continue the miracle and bring me to my most sacred prayer....long-term Survival?
As always my beloved Prayer Warriors...THANK YOU
Friday, November 6, 2009
Will my progress continue? Will there be good news or bad? It's such a stressful time waiting for any test results - will I dodge a bullet this time?
Your mind plays terrible games- either you just don't think about it at all OR you start playing out scenarios.
My prayer for today: That the PET Scan shows NO new cancer lurking ansywhere and that my tumors are shrunken sooo much that my Cancer Team can begin planning my next tumor-resection surgery.
Wednesday, November 4, 2009
I didn't have a bowel obstruction, but most likely a twisted bowel or pinched bowel that resolved itself this time. Docs can't be 100% certain, however the surgeon and resident both said that they see this with their chemo patients - bowel mobility is compromised.
Here's hoping for a pain-free, hospital-free future. Except, of course, when I can have my miracle-producing suurgery that will rid my body of the evil tumors!
Hats off to my AWESOME Prayer Warriors.. IT WORKS
Monday, November 2, 2009
Sunday morning I had a sudden onset of twisting, cramping upper abdominal pain. It lasted for about an hour and then subsided. I thought it was a weird form of gas, but it was similar to the location and pain I had in September with the bowel obstruction.
I had a pain-free rest of the day. Monday Morning: After a bowl of Corn Flakes, the same pain reared it's ugly head and was much worse than before. Relentless, twisting pain. I thought it would subside like it did before, but it did not let up.
I had Lee take me to Elmhurst Hospital instead of Loyola because I didn't think I could stand the longer ride to Loyola and I was counting on the fact that Elmhurst ER could get me in quicker and I could at least get x-rays done before going to Loyola. Lee had to cancel his business trip for Tues./Wed. I feel terrible.
I am now at Loyola, drinking that chalky contrast liquid to get a Cat Scan. the pain is gone, but who knows if it'll show up again tomorrow.
My prayer is that the bowel untwists itself on its own so i don't need surgery OR the dreaded NG tube. I have been crying and panicking all day at the thought of getting that horrible tube crammed in my nose and throat.
I have to tell you, I am SICK & Tired of these hospital excursions. These interruptions affect my chemo and future treatments and healing.
Thanks Prayer Warriors, I'll keep you all posted
Wednesday, October 28, 2009
Monday, October 26, 2009
You, my dear prayer warriors are MY Flash Mob. You all come together in prayer for my healing. How blessed am I?
Listen to the words of this song - "I got a feeling, that today's gonna be a good day.." I always need to remember to HONOR the power of your prayers and support and to invoke the spirit of the song- "..today's gonna be a good day.."
One person described the feeling he got from watching the Flash Mob Dance as "Joy Rising", I agree.
Thursday, October 22, 2009
I don't look in the mirror very often, so when I do, I am sometimes taken aback by what I see. I don't "dwell" on all the changes that Cancer and Chemo have done to my body, but it is sometimes a shock:
Emaciated: Cancer skinny is just plain ugly. There is no joy being under 100 lbs, hard, bony and saggy skin. I used to be doughy and curvy now I'm all hard angles. I miss my regular clothes, although it was mostly work clothes.
How Dry I Am: Chemo does a number on your skin. It's sooooo dry and itchy. Sandpaper texture.
Hair? I haven't lost all the hair on my head but it's pretty sparse. I wear doo-rags most of the time and my wig. I look like Beetle Juice or Krusty the Klown. My eyebrows have gotten really course and my eyelashes have grown, which seems odd. I'm still on the fence about shaving my head. If it's decided I'll be on several more rounds of Chemo after my Pet Scans November 6th, then I might just shave it all.
It's just so hard to recognize myself sometimes. I know I'm still "me", I know people don't see me the way I see myself, it's just a shock sometimes.
On another note: 2 more weeks of Chemo then the PET and CAT Scans the 1st week of November.
My prayers for the week: to overcome the slight nausea and other gastro issues I'm having the past few days; to get my butt in gear and tackle the mounds of medical paperwork.
Thursday, October 15, 2009
As DR Lo put it, I am at a crossroads. What procedures and targeted therapies would be reommended? But at the end of the day, even though there are "options", when you're dealing with Cancer, it's all a crapshoot. There are NO guarantees Cyberknife will work vs Radio Frequency Ablation. Every patient is different and responds differently.
Given the fact that I'm Stage 4 with tumors all over my liver, not nice and isolated in one lobe, I've been "lucky" thus far, with my tumors shrinking and good response to Chemo.
But where do I go from here? There are lots of questions and fear and confusion and decisions on the horizon, my Damn Cancer better sit up, pay attention and get the hell out of my body!!!!!
Wednesday, October 14, 2009
I did 2 unexciting but "normal" things:
I made Spaghetti Sauce - I haven't cooked much since being diagnosed, so this was a biggie. My favorite food I make is my homemade sauce, too bad it doesn't taste so great for me BUT me and the girls and my brother Kevin actually sat down together and had a meal! We talked, we laughed, the girls bugged each other...BEAUTIFUL!!!!!
I went to the grocery store - I hate grocery shopping, and Lee or Colleen have been doing that chore for the past 7 months, but yesterday, somehow, I felt normal. Although the cashier that's been there for years asked me if I've been sick, since she hadn't seen me in so long. Well, yes, you could say that.
Nothing else of note this week. Although I am contemplating a somewhat big purchase- a Cricut die-cutting machine. I'm getting back into Scrapbooking and this does-it-all tool is calling my name. Costco is having a good deal on a bundle and I've gone there twice to just look at it. I'm ususally more decisive and just go for it but.......$$$
Have a GREAT Week my Prayer Warriors!
Wednesday, October 7, 2009
One thing I am trying to always keep in the forefront of my mind is Gratitude. Now, many people refer to their journey's as "The Gift of Cancer"- meaning that the illness opened up their hearts and minds and they received so many gifts in the face of a terrible illness. I, personally think that is a contrite, cheesy, awful way to describe this terrible disease. Let's call a spade a spade folks, Cancer sucks.
What this journey has taught me is the absolute beauty of people- the givers, the doers, the casserole makers, and most of all the Prayer Warriors. I continue to be amazed at the wide circle of people who continue to pray for me. Not only my immediate friends an family, of course, but friends of my parents and in-laws, the kids of the friends of my parents, my church Community, past work colleagues, and the list goes on and on.
One of my most recent and beautiful gifts is from a woman from my Parish that heard about my illness. I don't know her personally, but our kids go to school and choir together. She made a trip to Lourdes last month and carried a medal of mine with her, had it blessed, lit an eternal candle for me and brought me back lots of Lourdes Water! She did that for me, a stranger! so overwhelming and beautiful a gesture.
I think what's overwhelming is that with each act of kindness, I often ask myself what I did to deserve this circle of prayer. I'm no extraordinary person. I'm not overly involved in any volunteer or community services. So how did I get so blessed?
I may never know the answer, but I DO know the power of prayer, and how it is continuing to heal me.
For each and every one of my Angels, I pray that God bestows on you the grace and blessings you have so freely given me.
Sunday, October 4, 2009
Thursday, October 1, 2009
According to my latest bloodtest, my tumor marker, CRE, which was at 1400 In March when I was diagnosed, is now down to 2! Yes 2! It was 5.5 when I stopped Chemo in August. So this shows that while the chemo will leave your bloodstream in 24 hours, it stays in your CELLS and is cummulative.
So far the plan is I get 3-4 more rounds of chemo. Then a PET scan to see if any live cancer activity lurking in the liver or elsewhere i suppose. If no live activity, then the Team will come up with plan- liver reseaction, targeted chemo, RFA etc....I'm guessing after the 1st of the year we'll have an idea.
Thanks to all of you for your continued prayers!!!! You are ALL responsible for my progress and healing! XOXOXOX Peggy
Wednesday, September 30, 2009
In one way, I'm glad to get back on chemo so I can continue killing my tumors. part of me is scared that the hiatus caused some cancer to return or grow. Nothing I can do about it, sadly, but get back in the game.
It's been nice not having mouth sores or finger and heel fissures. It's also nice not having to deal with the poo-pouch anymore. The reconnection is not as bad as I feared. Not great, but not as bad.
Have a great week my praying warriors. Please know I continue to cherish the support and strength I get from all your prayers and good wishes
Saturday, September 26, 2009
Saturday, September 19, 2009
Still sore from surgeries- I dread sneezing as it does a number on my abdominal stitches. Eating enough throughout the day still a challenge, and fighting lethargy too.
Lucky for me, Ruth, my sister-in-law, is making a return visit this Monday to help cart me around while Lee is out of town, and give my parents a break too. Again, I am so very blessed to have such support in my life.
Friday I am going for a Wig Appointment. The hair is just going and going, I look really silly now.
Nothing too exciting. I need to rally, get some energy and get back to chemo in a few weeks. '
I am getting really antsy and annoyed. I just am ready to be "normal" again. It's been 6 months since diagnosis - went kind of fast. I want to do the things I used to bitch about- cook dinner, do the laundry, drive my kids all over town. I feel so lost right now, and bored.
Thank you all for your continued prayers, love and support!
Friday, September 11, 2009
My sister Katie kept you all updated- here is condensed summary:
Two Mondays ago I was admitted to hospital after spending an entire day in the ER (9:30 am thru 6:30 PM) . X-rays revealed no bowel obstruction but a subsequent Cat Scan Did.
2 days later I have surgery to untwist my bowels (the cause of the pain and misery that suddenly came on that Monday), the surgeon also reversed my ileostomy (Stumpy) and put in a central line in my neck since my original portable catheter was taken out.
So, I have one long-ass crooked scar from pelvis to above the belly button. I have the open wound I need to dress each day where my stumpy was and I look like Frankenstein with the central line with three IV connections coming out of my neck.
The heinous procedure I endured was getting an NG tube stuck down my nose and into my throat. This procedure rivals the barium enema, let me tell you. Can you imagine getting a tube, with 2 dangling knobs snaked up your nose, thru the sinuses and into your throat? They heard my screams on the entire 7th floor. It was awful. The reason for the tube was to drain off the bile and whatever was backing up in my bowels due to the obstruction. As a patient with abdominal surgeries, I understand that we are prone to obstructions etc because of scar tissue build up..God I hope this passes me by!
I was also put on IV nutrition- couldn't take anything by mouth- except an ice chip- for over a week. Even though food tastes like crap to me anyway, to not even be able to take a nice sip of liquid is cruel. So now, after not eating solid food for almost 2 weeks, I have to start eating again.
I feel like I'm starting all over again with this food thing. After the last hospitilization and getting my ilesotomy output under contril, I was gaining weight and eating more. Now I have a new set of things to deal with because of the reversal. I just hope my tranition from bag lady to normal plumbing hook up is not as bad as I fear.
Thanks to everyone for your continued prayers. It''ll be a few weeks till I get back on chemo and tumor attack mode. I have a new portacath on my left side now. So I have 4 new scars on this old body of mine!
Wednesday, September 9, 2009
I spoke to Peg this morning. The last couple of days have not been pretty(I'll let Peg provide the details when she is back on line as only she can and I don't want to.) but her recovery is going as expected by her doctor. Now she just needs to start eating solid foods today so they can see how she reacts and remove the feeding line. If that goes well she should be out of the hospital Thursday or Friday.
Thank you for your continued prayers. I believe they are making the difference.
Thursday, September 3, 2009
Surgery to reverse Peg's ostemy and correct the blockage went very well. She says she feels like she was hit by a truck today but otherwise she sounded pretty good when I talked to her. The stoma remains open to heal closed on its own and she has a new incision above her belly button. They also added a place to give her nutrition so they can fatten her up a bit. It doesn't sound like she will be back on chemo for a couple of weeks and they'll have to put in a new port since the first one was infected and had to be removed. That's it for now. Must get back to work.
Wednesday, September 2, 2009
I'm updating the blog today because Peg has been in the hospital since Monday. I'll give you the facts and of course she can put her colorful spin on it when she has a chance.
She was in a great deal of pain once again. After a CAT scan they determined there is some kind of a blockage they need to fix. A tube had to be put down her throat or nose (Mom was there so I'm not certain on that detail but she said it was an awful experience for Peg and there were a lot of F-Bombs dropped through it all) to remove anything in her system that was trying to get through. Relief. Surgery required to repair blockage and surgeon wants to reverse ostimey at the same time. Oncologist disagrees because she wants to do radiation. Surgeon says not enough evidence that radiation is necessary. Radiologist also agrees that radiation is not the way to go. Hmm..what's a girl to do. Decision time. Surgery at 10:00 am to fix blockage and reverse ostimey. Peg will be in the hospital through the weekend. Keep you posted.
Continued prayers requested to get this wonderful sister of mine to a complete recovery.
Saturday, August 29, 2009
I HATE YOU CANCER, from the bottom of my heart and soul I HATE YOU
Friday, August 28, 2009
That reminds me, I better take pain meds now before I attempt re-packing.
Nothing else to report or bitch or moan about, except needing to attack insurance company, hospital bills etc!!!!
Have a great weekend My God Squad And Angels!!!!!
Wednesday, August 26, 2009
Friday I will get a new porta-cath inserted on my left side- gotta keep the Chemo going.
What a Week!
Tuesday, August 25, 2009
I really don't want to spend another damn day in the hospital..I left a message for the Nurse in Oncology to advise.
Monday, August 24, 2009
The medicine I've been on since getting out of the Hospital are kicking in and slowing the plumbing down. This is a good thing. The primary reason Dr Shoup wants to do the reversal is getting my plumbing back in tact to slow down output. If in fact it all slows down and I have no diarrhea, then my nutrition and weight gain should kick in. HOWEVER, one of the biggest adjustments to getting colon and bowels re-hooked is a constant diarrhea. So much so that Depends is a must, and you are a slave to the bathroom all day. For the lucky ones - 40%? the adjustment is 2-4 months. For the majority, it is 9 months to beyond a year.
That possibility of me being in the majority defeats the purpose of reversal. IF I continue to have high output, at least it's in my "pouch", doesn't cause me pain and I can retain my current quality of life. Now, my digestive track is short, so things move quickly anyway with this ileostomy, but I'm of the mindset to put this off until after chemo and any surgeries, so I can deal with the side effects singulalry, instead of in the midst of chemo etc.
Radiation Therapy - Talking with my oncologist, she wasn't sure why an appt was set up with radiologist, as it's not for SURE they would radiate me. I'm assuming it's just a meet & greet and consultation. I have tons of concerns on radiation - collateral damage to nearby organs, brittle bone syndrome, etc... Update: I just spoke with the surgeon, and she's fine with me waiting on reversal. She thinks when I get liver resection, she'll reverse it then. Also, she told me that Radiation isn't what her and the Radiologist want to do. Dr. Lo, my oncologist is the one that is Pro-radiation, to boost the chance of non-recourrence in my rectum/colon. Dr. Shoup, the surgeon says that there is no data that clearly shows preventative radiation prevents reocurrence. I'll consult with Dr. Benson in Sept on these items.
Liver resection - while it's still great news that surgery is a possibility, the oncologist stressed that because there are tumors on both lobes, it would probably be surgery on one of the lobes, with other therapies for the other lobes. Again, can't cut up all lobes of liver or I'd have no liver.
So that's all I know for now.
My current issue is to get my portacath site in line- the rash is slowly going away but the soreness and pain upon touch is not in the slightest. Wednesday they will see if nurse can access port, if so, I get the full chemo, otherwise, probably just the Erbatux again. Who'd ever believe they WANT to get back to chemo?? It's an odd world we Cancer folks live in, but there it is.
Blessings to all my revered praying angels
Saturday, August 22, 2009
I have lots of food to look forward to when chemo is over some day!
Friday, August 21, 2009
Here's the News:
there was a conference held at Loyola with all the Gastro Intestinal staff- surgeons, oncologists etc... and they discussed my case and determined:
1. Reverse My Ileostomy (bye bye poo pouch) I have so much output that it keeps me from gaining weight and I get dehydrated. I dread the post-reversal Depends moments, but hey, whatever helps the cause. The surgeon has an opeing a week from Monday. 2 days in the hospital.
2. My Liver is Resectable!!! - The Doctors took a further look at my recent Cat Scans and said some of the tumors CAN be surgically removed because they've shrunk enough! Remember, I had 2 very large masses on my liver, then once they shrunk, other tumors were revealed on all 3 lobes of my liver, making it impossible to do surgery.
I am stunned at the good news but oh so Grateful!
I have to thank all you warriors who have been in this fight with me from the very beginning- I know what answered prayer is, many times over, but this is a BIGGIE!!
Keep on praying my Angels- the power of your prayers is WORKING
Thursday, August 20, 2009
thus, the dehydration and weight challenges. They tried a mix of Lomodil and Opium tincture 2 days in the hospital to slow it down. Didn't work. They upped the Opium dosage when I got home and KNOCK ON WOOD - it "seems" to be slowing it down.
What I pray for, is that the drugs work, because next step would be an IV feeding tube. I can't go there folks. Failure not an option. The Gastro Intestinal Cancer team is meeting today and will discuss my case to come up with plan. They need me stable and strong to keep on with chemo then Radiation.
Radiation- the word just scares me. The Breast Cancer ladies say it's a cake-walk compared to chemo and it's side effects. However, won't be the case for me, due to location. I mean, come on, I'm gonna get poison lasered up my Butt. Sores, fistulas, rashes, pain in the rectal area is different than your arm or armpit, you can still sit and lay down and walk with a scabby armpit.
I have to try and not get worked up about it. Lee keeps saying that this is the price to pay to get healed from the cancer. And that's the goal.
Another bump in the road- I got a rash all around my porta-cath- the exact size of the bandage covering. I can't get the 3 primary chemo drugs in my arm, only via port. So please lift a prayer that this rash heals and DOESN'T turn into an infection, I need to get back on full chemo cycles.
Other than that, just another day in Cancer Paradise!
Tuesday, August 18, 2009
Public Service Announcement: Take care of your Gastro Intestinal Health OR you will have to get a Barium Enema
OK, so I have this pain in the ass, constant, miserable, blah, blah, blah. The Dr. wants to perform a Barium Enema so they can get better pix on the nether region to see if I have any blockages or fistulas. I had no idea what to expect.
I have to lay down on a table that is an x-ray machine. I'm in a flimsy hospital gown, I'm skeleton skinny and every bone was digging into the table. Ah, comfortable!
So I ask the Devil Incarnate(enema giver) what to expect:
" Well, we insert this probe (think a straw with a thick eraser on top), 7 cm up the butt, then inflate a balloon in the rectum so the probe stays and we can get pictures. It will be "uncomfortable". I should have known I was doomed.
I was very anxious and started crying, I was just sick of everything. He started the insertion and from there, it was one long excruciating pain. I was already hyperventilating, which causes my fingers and toes to get numb and "lock up" unable to uncramp them. The Devil Incarnate than proceeds to inflate balloon. Another howling bout of pain. Then he started to get the barium liquid going....pain, pain and more pain..then -POP!, the probe and balloon fall out my ass.
After deep breathing and trying to get subdued - I said to the Devil - "Now what? Do I have to go thru this again?"
They got my nurse down from the floor and had her give me 2 doses of morphine. DIDN'T touch the pain one iota!
I get myself some what together and they do it all again. I had to bite down on a towel to keep my screams at bay. One of the attending techs sat next to me, held my hand and let me scratch and squeeze the living hell out of her! It was hideously painful. The worst I've experienced yet. ( I thought my prep for colonoscopy was the worst, this beat it 500%) The kind of pain you wish on mortal enemies and child abusers. I told them to take it out, I'm not going thru this again.
Well, luckily they got enough xrays to determine if I had blockages and leaks- All good.
I told every Dr and Resident that did rounds, they MUST go thru a colonoscopy prep and a barium enema as part of their training. And I was dead serious.
I'm almost certain that the pain I'm having is due to old poop in the colon trying to get out. After a regular enema the next day, I passed an oldie. Pain gone. I did another today, pain returned. Something's trying to hide,and then get out of my system.
So if you suffered thru my description of the Barium Enema, you are a brave soul. Hope it wasn't too gross.
Remember people: Eat fiber (fruits, veggies and whole grains), 30 mins of activity each day and pay attention to ANY changes in your gastro intestinal issues. I thought I had hemorrhoids, not freaking colon cancer! Take care of your BUTTS!!!!
Friday, August 14, 2009
Tuesday I started having output from my butt - that's supposed to be out of commission, as I'm on an ileostomy. The Dr.was thinking this was unusual and wanted me to go to ER. After 6 hours, and some xrays, they determined that it was just some old stuff" wanting to escape, and they saw no blockages or fistulas.
The frequency of wanting to "eliminate" slowed down and then Bam, on Wed it started all over again on my way to Chemo. Lots of pain and urgency, so Dr. Lo postponed chemo, consulted with Dr. Shoup, my surgeon, and had me admitted.
MRI shows that I have some leakage from my ileo into the colon- the contrast liquid they give you to light up your organs was found in my colon.
So now it's a mystery as to why:
do I have a fistula? When tissue from to adjoining organs kind of fuse together? They haven't seen it on the scans, but the Dr. stated that it doesn't mean there isn't one.
Is it just leftover junk in my colon?
My other issue is the amount of liquid output in my pouch. My potassium and electrolytes are too low because of how much I'm losing thru diarrhea.
So, my prayer for this week is: Dear God, please let my doctors find a definitive answer to my painful output problems. Even more urgent, is for a way to slow down my output and keep me from having to go on a high dose drug with lots of side effects (tincture of opium) OR the worst would be doing IV nutrition. I pray that the lower spectrum drugs can slow down my output and loss of electrolytes.
Love to all my angels
UPDATE: Damn, I have to stay another day! The gastrograph film test they want to take can't be done today, MAYBE Satruday if not Monday. Do I have stay in the hospital all weekend? I think the prep they do has to be done at hospital. This totally sux.
Saturday, August 8, 2009
Monday- Downtown with the nieces for Architectural Tour on the Chicago River. It's also my sister Kate's B-day!
I'll be attending a talk at Gilda's House (Gilda Radner from SNL) led by Colorectal Cancer Expert Dr. Al Bensen. I want to hear about current treatments. The exciting thing is that I have an appt. with him the very next day for a 2nd opinion! Trish Simon, a friend of my Sister's friend Linda, is fighting colon cancer that has metastasized as well. She is younger than me, but what a fighting spirit she has. She used her connections to get me an appt with Dr. Bensesn at Northwestern. I am so greatful to Trish.
I still don't have my medical records yet, which worry me. I need to put the pressure on to get them so Dr Bensen can review before Aug 14th.
I'm scared but anxious to start the 2nd opinion process. Some Dr's are very blunt and lays it out on the line- the good and the bad. I want to stay in a "good" hopeful place. But that's purely up to me.
I also have to tackle the paper work to apply for Long term Disability benefits- what a pain in the butt. My job has been eliminated at C&W, and with weekly chemo treatments and upcoming radiation, which is 5 days a week, I am limited in my ability to work, along with the side effects of chemo.
Wednesday, August 5, 2009
I asked a bunch of questions today-
1) Would it be possible or more proactive to try a targeted therapy to my liver tumors instead of waiting it out for chemo to lose it's efficacy? Reply: stay on chemo as long as working, for best results
2) How many colon cancer patients are you currently treating? Reply: 10; She treats a high number of breast cancer. Which I can see, most of my connections and people at Chemo are Breast Cancer.
3) Colon cancer is now 2nd leading cancer diagnosis of late. Does the Loyola Cancer practice represent that stat in it's patient base? Reply: Yes
4) Why aren't cancer patients, or Me not eligible for Liver transplant: Reply: Very risky; new livers have a high occurrence of getting cancer. so a waste of a healthy organ
So I am in process of getting 2nd and 3rd opinion lined up.. waiting on getting hard copies of medical records. Just want to hear other experts.
My CEA marker reduced again from 9.9 to 7.5.
Clarifications around some of the smaller tumors which is a good sign that they are "drying up" as Dr.Lo put it.
So all in all, positive results.
I am convinced that to win the Battle, 90% is my will, my attitude and the Abundant Blessings I receive from my God Squad and angels network of friends, friends of friends, family etc..
Bless you All.
One prayer request: My childhood next door neighbor, Wendy, lost Both her parents in a span of 3 weeks. Her dad from dialysis complications, and her Mom, this past Sunday, from cardiac arrest 3 days after her triple bypass. Wendy and her mom were best friends. I ask for strength and healing while she processes these losses so cruelly at the same time.
Sunday, August 2, 2009
I worry if I have anything noteworthy to say that day or that week. Will it be one of my sassy, "I will fight this damn cancer" posts, or a funny poo-pouch blow-out, or a Gratitude, or "this chemo crap is annoying me" ?
Well, it's all of the above, and then some. Blogging about my Cancer journey has been a therapeutic endeavor. For people who know me, my voice is loud and clear via the writing- I write pretty much how I speak. That is what is connecting me to my followers.
I'm also very flattered by the feedback I get, both on the blog and through email, that they love reading my entries, feel my strength in the Cancer battle and that I'm, "inspirational". well, inspirational isn't how I would describe myself, as I'm still trying to find out how to manage all the "life lessons" and blessings and emotions that go along with my illness. I do love the fact that my friends and family can be a part of my journey via the Blog.
All I can say is that I blog what I feel and what I think, the good bad and the ugly.
Saturday, August 1, 2009
He then reached out and wrote me a great letter full of incredibly touching support, details of his college buddies and his family and career as Judge, in Riverside, California.
I was moved to tears. That this busy man took the time to write me and tell me he and his wife and staff are part of my "team" of prayers is just beyond humbling.
I will of course write to him and express my overwhelming gratitude. I did call Kirsten, my college friend who blessed me last week by coming from Milwaukee to Elmhurst to spend a few precious hours with me. Kirsten was at the Marquette reunion last week and we also brought up Tim and his sister Camille.
So, once again, the love and blessings are abundant in my life. I am so humbled.
Tuesday, July 28, 2009
"no way, I said to the nurse. Weigh me on the regular scale. 105 lbs. I grabbed the nurse and hugged her. "My family will be so happy I gained weight"
I think the social outings this weekend helped me to eat more than usual, and I was a bit more conscious of forcing myself to eat. So, even though food tastes - tasteless" and my mouth still hurts, I DID it. I just have to keep going!
Sunday, July 26, 2009
Friday, July 24, 2009
I had a good run of errands today with mom, then took a walk, now that I'm feeling better. Getting dehydrated is more debilitating than I think.
Anyway, on my walk, I had some prayerful talk with God.
"Dear God, I WILL not die from this cancer. No freakin way. I need 20 years, 20 years to see my baby girls on their paths, paths I hope me, Lee and of course YOU, will guide them .
I will not be one of those 5-year survival stats. I DO not want to be a sad story at the end of it all. I need to live, to thrive and figure out YOUR purpose for me though all this. Please give me the time to do it, I will do you proud, just show me the way.
YOU NEED ME to be your soldier, to minister in whatever way you want me to. I ask for this, and it may be selfish, but I promise not to disappoint."
if needed. I think it's starting to help. It tastes better than plain water and makes me thirsty so I think I'm drinking more. I also need to pump immodium.
So I went for full chemo on Thursday, with IV hydration on Saturday, plus taking my pump off(the 48-hour folfuri chemo infusion)
Over the weekend, we went to Art & Mindy's house in Mokena for our annual swimming party. It was cold and damp. but the kids managed to make use of the pool. It was soooo great seeing everyone and I did my usual "shopping" in Mindy's Sample closet - she reps several clothing lines. I scored 3 great sweaters for the fall- super cute!
I've got a heavy schedule of Hospital visits this coming week- Chemo, Cat Scan and IV infusions.
Oh and good news, my CRE (tumor marker) blood count went down again from last weeks 11.9 to this weeks. 9.9. That simply means I'm still responding positively to chemo. It doesn't mean that when it gets to ZERO, the tumors are gone. BUT, hopefully after this next Pet Scan, the oncology team will start discussing other target options - do I stay on current chemo regimen? They say they will change the regimen when it stops being affective. So who knows how long.
Have a great weekend
Friday, July 17, 2009
- Roasted Tomatoe Bisque Soup
- Chicken Veggie Soup
- Asparagus Soup
- Potato Cheese Soup
- Brown Rice
- Glazed Carrots
- Home Made Ranch Dressing/Dip
- Chicken and Gravy
- Alfredo Sauce
- Chocolate Chip Cookies
- Deviled Eggs
Wednesday, July 15, 2009
She told me her and the team, including st Shoup, my surgeon looked at my PET Scans and determined that surgery on my liver is NOT an option. The tumors are all over the liver, not concentrated in one area, which, if they tried to cut out the tumors, would leave me with no liver and I am not a candidate for a liver transplant.
So, needless to say, I am bummed that that is off the table. Dr. Lo said there are other options to reduce those tumors non-surgically- radiation and I guess some other targeted procedures. After the next scan, in a month, they will review and look at options.
Not sure if I consider this a setback or bad news because I don't yet know how the other "options" compare to surgery- success wise. It feels "bad" to me at the moment, but I need more information that will give me hope.
Saturday, July 11, 2009
Jancie and Mike's son, just went through a horrible year of recovery and rehab due to being hit by a Drunk Driver. Michael is doing great, and just got married a few weeks ago. You can see his journey at Caringbridge.com. Michael Marion.
Janice and Michael are 2 of the most beautiful, loving, giving people you'd ever meet. To have them in your lives is a true blessing, I am sure. So here I am, on the receiving end of a gift of love via my parents and their relationship with Michael and Janice, and of course, their Mom, Laura, a most dear friend of my Mom's. I don't have a lot a would need Janice to do, but she's a FANTASTIC cook, which will be a big benefit to Lee and the Girls!!!
The gifts and love just keep raining down on me, I only ask how God wants me to pay it forward!
Thursday, July 9, 2009
I was very week and fainty yesterday - any exertion made my heart race. Turns out I was a tad dehydrated (too much iced tea? doesn't caffine dehydrate?), so they gave me a bag a fluids before deciding if I can get chemo too. The fluid really helped perk me up and Lee said I looked better- a bit cadevery and gaunt was my morning look.
Bad news- I dropped more weight. That is BAD. I ate 2 corned beef sandwiches this week and thought that would help. Shit, I didn't have as many milkshakes and was eating a brothy soup for meals, so my calories dropped. I need to figure out how I'm going to get 2500 calories in me a day to gain weight. My Mom is on my ass, I better not piss off Babs!!!
Going to Wellness House for Support Group then lunch at Neiman Marcus for a French Dip sammy with cheese. I think I'll go to Williams Sonoma to see if they have any good jarred gravies - I van pour that slop on noodles to help slide down. Who'd think that Cancer is all about Food for me.
Speaking of cancer, my CRE, tumor marker, blood indicator went down again to 13.9, down from 19.9 a few weeks ago. YEAH!!!! Keep shrinking you bastards!
The Doctor mentioned that Radiation to my rectum may be a possibility. Treatment to be done before any surery to resect the liver. Women at the support group say radiation is easier to take than chemo. To me it seems it would be the opposite. But what do I know.
That's it for now- thanks for your continual support and love and prayers, I am in GOOD HANDS my angels!
Tuesday, July 7, 2009
My hair is definitely "thinner" since being on chemo. What was a visual shocker to me yesterday was the hair in the sink after I dried my hair. I thought it was Colleen's or Michaela's hair- but No, theirs is Long and Curly. These hairs were 2-3 inches and straight.
It didn't register that it was MY hair until later in the evening when I brushed my hair.
Damn, It's Mine!
I have no idea if it'll just keep slowly falling out or come out in clumps. Will it just keep thinning, slowly over the long course of my Chemotherapy? Should I just shave my head now and get it over with? If I'm gonna be thin and patchy, I probably should shave it. We'll just have to wait and see how this plays out.
One more thing to add to the Fugly Stick of Cancer : Face and chest rash, sores on fingers and soles of feet, numbness in fingers/hand, diarreah, weight loss, fatigue, weakness, brain fog, mouth sores, loss of taste, skin as dry as a sandpapered alligator. Makes me want to break out in Maria's "I feel Pretty" from West Side story. Shit
I'm actually scheduled to get my haircut today, I was going to go shorter, for easier maintenance and less bed-head. Now I'm not so sure.
Monday, July 6, 2009
Food - still a challenge to get the calories in to gain weight. BUT, I had Mom take me to the Prairie Cafe for my chicken noodle soup (not very calorie laden) and I also ate a Cornbeef sammy - almost the entire thing. I dunked it in the soup to make it soft and easy to swallow. My Mom- who is on my ass to eat - was very proud. I purposely called her to take me to lunch so she could witness!
Stumpy and the Magical Poo-Pouch: No embarrassing blow-outs like in the beginning of this cancer crap, but it is annoying to constantly be AWARE of the weight of a full bag hanging off your stomach and in your undies. Also, the new flanges I have - the disks that stick to my stomach and the bag is attached to - are SUPER adhesive. I had a hell of a time trying to take it off the other night. The 'No-sting" adhesive removers burned the ever-loving snot out of my skin. I swear, the disks have super glue on them - it took a half hour and hot rags to loosen the gluey hold on my stomach..OUCH!!!!
Gratitudes: I am grateful for my rash relief, the calories I was able to eat today and as always, my amazing huge loving circle of friends, family and strangers who continue to heal me through prayer, support and service. My neighbor Susan can use a couple prayers for her healing: she had a double mastectomy last week and is now home recuperating. She looks great, they caught the breast cancer early and may even be able to avoid chemo. I hope I can be of service to her during her journey.