tmay's Cancer Blog
August 24, 2010
I received my results from the Weisenthal lab regarding testing of my cancer cells. I was tested for various FDA approved chemo drugs and combinations and they have found a combination that shows a good chance that will work. Vinorelbine (Navelbine), Gefitinib (Iressa) and high dose Tamoxifen. Of course, I am familiar with tamoxifen but has anyone ever taken the other two? I load the Tamoxifen (12 tablets at 20mg per day) and the Iressa (500mg per day) for 3 days taking IV Navelbine on day 2 every week. So it’s a weekly Monday, Tuesday, Wednesday pill load with IV chemo every Tuesday. My local oncologist did not give me any problems with this regimen though it is not “standard” and no published materials to back it up. It was funny because I was all ready to do battle with him but other than some snide comments, he was okay with me taking this. The theory is the tamoxifen and Iressa make the Navelbine work better and that is what it showed in the assay test for MY actual live cancer cells.
So…I started taking the pills yesterday and did my first IV Navelbine today. Wish I could say it went well but about an hour after the infusion I had the worst stomach pains…didn’t see that on the list of side effects so I’m not sure what was going on. The pain subsided after about 2 hours and I feel much better now (understatement). It’s amazing how once pain goes away you forget how bad it was. Probably by tomorrow, I’ll have a vague recollection of it. So now just one more day of the pills and I’m off till next Monday (Yea!).
Dr. T is saying that I’ll feel worse before I feel better,,,about two months of this before we can tell if it’s working. No, I didn’t do a CT scan before this for many reasons, the biggest is…I just don’t want to know anymore bad news. Last scan was end of May and we know it’s in my liver…that’s enough info. I do know my CA number which is in the thousands and has doubled since may and I know how bad my ascites is so we are going to go by CA number and whether my ascites diminishes.
I’ve been feeling pretty crappy the ascites fluid accumulating faster and faster with each week. Had another drain last week (3.1 liters) and just general family stress. I’m an awful daughter and mother, wife and person. I just don’t have the energy and don’t want to have to deal with everyone else’s feelings. I managed to really hurt my mom yesterday and I’m sorry about it but….I feel very hurt and that she doesn’t hear me. When I deflect her offers of help (I.e. she wants to do everything, take over, and hover) she pushes harder which makes me retreat more, then she gets frustrated and it escalates.
Help! I’m not ready to loose my independence,,,not ready to climb the stairs to my bedroom for the last time and be treated like Heidi’s cousin. If one is treated like an invalid, one becomes an invalid.
Okay….some “Up” news,,,Maggie has started her Junior year! OMG! How can I have such a grownup for a daughter? She is wayyyy more mature than me! She’s got a really big year scheduled. And is acutely aware of college apps looming in the future. She ran through a summary of her teachers and she seems pretty happy with most. This weekend is the OVCA Run (Yes, and it was 105 today) and she has about 10 of her friends running with her on Saturday. I hope to feel up to being at the finish line and that my sassy “Cancer Sucks” t-shirt comes in the mail in time to wear it. I’m so glad that she has such great, awesome friends!
Sorry this is so rambling. But wanted to update. Love to you all, ya’ll are my rocks!
Teresa
Results from Assay Test Started Chemo #6, 
11 comments)
Teresa,
Your daughter is so beautiful. I’m sure you’re quite proud. Next, you are not a bad person, mother, daughter, wife, etc. You have been coping and dealing with life under extreme circumstances for a really long time. How you manage to stay so positive I don’t know. You are a fighter and I’m so glad the test showed some good chemos to wallop the cancer cells. The only advice I have for you is not to beat yourself up. You are doing the best you can, as is your family. You all need to give yourselves some breathing room for being imperfect. And no, you’re not an invalid and your life still matters and your family still needs you. I hover around my kids too when I want to help them just because I want to be close to them. You are well loved and much needed. And after whatever nasty side affects this new treatment is going to send your way, you’re going to walk right through it all and get your strength and stamina back. You will feel like a new woman. I’m praying and wishing all the best for you. God bless. Gail
Hi Teresa,
If only there were a road map (or these days, I guess GPS) for families on getting through cancer. You are a fabulous wife, mother, and daughter. Tell Maggie that one of your cancer pals (i.e. me) is really impressed that she has organized friends for the run. That says a lot about her, her friends, and you. Your mom is hovering, probably because she needs to feel like she is doing something for you, her daughter with cancer. She can’t make the cancer go away, and that is hard for a mom. She has seen your pain and your ascites. Maybe all of you can just take a step back. Can you gently tell your mom that when you need help, you will ask?—You want to do things for yourself just like any grownup. But you are glad she’s there. (Are you? If not, don’t say this). Clearly, there is much love in your family. People don’t get so upset at others who aren’t as important.
As for the ascites, I am sorry it has accelerated. Paracentesis multiple times is not on anyone’s list of fun activities. Skipping another CT makes sense. You’re right; it won’t tell you anything you don’t already know. And the new, designed-just-for-you chemo must do its job. If this combo zapped the evil cells in the lab, now it can do it in your body.
I hope you can get some energy, and feel better from this new regimen. You are entitled.
With prayers and love,
Andrea
Posted on Teresa – Fat Momma’s Knock You Naked Margaritas! YUM! That’ll fix everything! Hehehehe
Ok, well I was only partially kidding….Uuuum because I don’t think we can drink on all this damn medicine, but if I’m wrong somebody needs to tell me! (Snickering to self…)
Cheers to you anyway, you are doing a wonderful job, so just hang in there. I know, I know. I chewed on my husband last night for nothing, nothing I tell ya. I am the bad wife! So there, I took it from you, you can’t be any of those things.
Have a great hump day.
Melissa
Posted on Hi T!
How great to hear from you! The results from your lab tests sound very encouraging and I’m so glad your doctor has gotten onboard and has no problems with you proceeding with the new treatment. It sounds like you are as prepared as you can be for what lies ahead in the next couple months leading up to the reassessment. I am praying with all my might that these drugs are the mix that is going to take out these cells once and for all!
Please don’t be so hard on yourself for not being 100% there for everyone in your family these days. You have been through so much and I don’t think they have that expectation of you. What they do have is the desire to help you (even if it’s too much sometimes!) and to not see you in pain. Maggie is quite a responsible young lady and I’m so impressed by her successful efforts to involve her friends in support of you and others going through cancer. That shows a great deal of maturity and not the all too common “it’s all about me” attitude possessed by many teenagers these days. I have no doubt that she is this wonderful young woman because of you!
Please keep us posted on how things are going for you. As always, I’m thinking of you and sending up prayers!
Love—
Martha
Posted on Hi T,
Thanks for the update. I hope the new drug regiment isn’t too hard on your system. And I wish I had the right words to offer. Andrea was right on target, I think. Some people are so good at knowing how to phrase things in the most stressful of situations. I don’t feel so gifted. But do know you are always in my prayers, along with your family, who obviously love you very much. I’ll watch for updates from you and I hope you are getting some rest in between treatments and meds.
Warmly,
Ruth
Posted on I knew it would work out. Lose the guilt because your job is to heal. The fact that you have educated yourself so fully on everything says it all. Love you, Sharron
Posted on Tmay,
You are never rambling. I always look forward to hearing how you are, and smiling at your posts. I am going to pray so very, very hard, that this is the treatment that makes that cancer slink back and retreat!
You are not a bad daughter, mother, wife or person for that matter. These are tough times. You have to have things on your terms and your timeline and everyone will have to respect your wishes. It must be so very hard for your mother to watch her bright, smart, funny, kind daughter go through this. Women are doers, when I get mad, my house gets cleaned really well! Perhaps you could find some small little task that she could do so she feels like she is doing something to help you! Just a thought!
Maggie sounds like a great daughter (you taught her well) I think it is fabulous that she has a team that is going to run, and surely hope you can be there at the end to cheer them to the finish line.
It has been hotter than hell here in Indiana this summer. That said, I have never understood how people live in Texas during the summer months!
Saying a prayer for you and your family, from my mouth to God’s ear!
Take care,
Bo
Teresa,
You’re not an awful wife, daughter, mother, or person. You are a warrior who is fighting for her life. Everyone around you needs to understand that you will take this journey how you are going to take it and there are times when you want huge support and there are times when you want to be left alone.
Your mom is afraid and I get her fear, but you have enough on your plate.
Do what you can to take care of you and beat this motherfu**ing cancer.
When it’s all said and done, and you’re NED, then you can worry about being all things to all people.
In the meantime, I’m glad you’ve found a drug combination which works and I wish you strength and healing.
Kick butt warrior.
Hugs,
Jill
Posted on Teresa,
You are doing great for a person dealing with so much on their plate. You are a tough lady, you got the chemo you needed/wanted (YAY). You do a great job taking care of your family and supporting them when you have the energy. Your mom is just being a mom, she’s worried and wants to help, and it should be understood that you want to be able to take care of yourself as long as you have it in you to do so – I think she just wants to make sure that she helps with mundane things so that you do have the energy to enjoy all the meaningful things.
Congrats to a new year of high school to the whole household! What an exciting year with her driver’s license, Junior Prom, PSATs, college applications, etc. I’m praying all goes well…
Posted on Hey T, it’s always great to hear from you. I’ll be praying hard that this new drug cocktail will step in and kick cancer out. You are a great Mother, wife and daughter and friend…nuff said.
Rest and get better, stay out of that Texas heat, have a Big Red on ice to cool you down, be well my friend, lots of love, hugs and big prayers,
Eli
Posted on You are a wonderful woman. Don’t ever doubt that. We all get a little cranky at times! Your mom understands. Gemma had a T shirt that read “Cancer picked on the wrong bitch.” I passed it on to a good friend of mine who wore it proudly also. Kisses from Pittsburgh.
August 6, 2010
Hello all,
Okay, I’ve been wallerin (hillbilly for wallowing) in self pity for too long but now have a good grip on the reigns again and, though the bastard may beat me in the end, I don’t intend to go down whimpering like a sniveling, snot nosed looser either. In other words I’mmmmmm Baaaaaaaack!
That said, I was dealt a pretty bad blow last week. I had my acites sent to a lab 6 weeks ago to be tested against various chemos to determine what had a chance of working. This was not a lab of my choosing but Precision Therapeutics had recently signed a contract with my hospital and that was where my acites was sent. They initially said testing would take 2 weeks then said they wanted “optimal” growth of the cells before testing and it drew out to 5 weeks. My nurse and doctor were getting frustrated (I was the first to use this lab from his office) and I was getting more and more angry, and suspicious ….just had a bad feeling about it from the get go. So last Thursday, we were told that the test was aborted because they didn’t couldn’t grow enough cells ….then they wouldn’t cluster or something. I was, at first, just numb, then when asked by the nurse if I wanted to start a chemo my doctor and I discussed as a possibility I just couldn’t say yes. I couldn’t say yes to another chemo without some kind of indication that it had some chance of doing some good.
So, I had to make a quick decision. I told her I wanted another assay test done by a lab of my choosing. She was on board. I had already had another fluid drain “tap” two weeks before so the question was would I have enough fluid for another test? I figured I probably did since I was already feeling full and bloaty again and we scheduled a parancentisis this past Tuesday. Meanwhile I had to choose a lab. Luckily, I had already researched this about a year ago and knew of the two best.
But there were a lot of “what ifs”. I’ve been off of chemo now for 8 weeks…that’s a record for me. I don’t feel like I can lay around for another 5 weeks for another assay. Would my doctor be amicable with this decision? Would the hospital let me waltz outta there carrying bottles of acites? Yeah, it’s my bodily fluid and I should be able to leave with what I came in with. Just lots of details. So last Friday morning, after hearing about the failed assay test the evening before, I cried to the ones that could make ALL THINGS HAPPEN….my parents. My dad shifted into first gear and called the two labs I was interested in and gave me the details. We picked Weisenthal Lab who said their tests took about 2 weeks and I worked with my Onc Nurse Cindy to grease the wheels at Seton Hospital and allow the transfer of the acites to me and add the heparin etc. Between my parents and Cindy, I felt like this could happen by Tuesday.
So Monday, I got the fed-x package to ship the fluid back to the lab, and had the procedure on Tuesday morning. My sweet Austin Angel, Nurse Jeffery, with the dew rag and pony tail made sure everyone knew what to do and made it happen, and I walked out of there around 2:00 carrying my styrofoam package of acites and vials blood.
My husband, Ben, was with me throughout the procedure, which was a first for him, to see that everything went as planned and we drove to my Oncologist’s office where Cindy saw to it that it was packed properly and picked up by fed-x. I think that, in a way, this was a good thing for Ben to experience. I’ve felt like he just floats along in the sea of denial and I’ve often wanted to just grab him by the collar and shake him. I think intellectually, and sometimes kind of romantically, he understands. By romantically, I mean, he can play the role of “the husband whose wife has cancer” rather well…but it has been a role not reality. Seeing 2.8 liters of milky green fluid coming out of my abdomen though kinda knocks the fluffy cheesecloth filter from the lens. A hard lesson but a necessary one that, I hope, will prepare him for other things to come in the future.
So, here it is Friday and I’m feeling a lot better with all of that fluid out of my body. Food is tasting better and I’m trying to eat more to gain some strength. I know it sounds like a little thing but last night I was able to walk up the stairs feeling less winded. Baby steps, but still steps moving forward. I see my Onc, Dr. T. Tuesday, and want to make it clear that whatever Weisenthal Lab suggests, be it Turnip Juice or Battery Acid, I’m going with it. I’m just hoping that the lab DOES find some combo that has a likelihood of being beneficial for me and will at least smack this cancer around a few rounds.
As I said… I’m still fighting. It’s just because I’m such a Bitch and have always had to have the last word.
Hi T—
It’s so wonderful to see your post and hear that you are “back in the saddle again,” ready to charge onward and attack this crap again. That’s the tough woman I’ve come to love and admire! Wow, ascites shipping by Fed-Ex—who knew? You suppose those drivers have any idea what is in some of those parcels they deliver? As for the turnip juice or battery acid—well, I don’t know about either of those. But I’m thinking Kudzu juice might do the trick—that stuff (that covers 1/3 of the state of Georgia) has to be good for something! Let me know if you’d like me to send you some—by Fed-Ex, of course! :) Please keep us posted on coming events and stay in the battle—something has to be out there that can kick this cancer to the curb!
Love and Hugs—
Martha
I just have faith that this lab is going to find the right cocktail for you! I will be waiting to hear. 2 weeks before you hear something?
Posted on You GO FIGHT AND WIN! I am so sorry that the lab screwed everything up and put you so far behind in getting a workable treatment plan. I know it is easier said than done, but Hang in There! I know how scary it is to go for so long with out any chemo when you know that your body needs something to fight, but you need to know what the right potential combination needs to be.
I am glad you husband was with you through all of this over the last few days. I think many husbands because they have “work” miss out on seeing what is really going on and can be in a little bit more denial. I saw that a lot in the chemo room while getting treatments that many of the women had a mom, sister, daughter with them not their husbands. My dad actually came with me more than my mom did as it was her down time for her to take care of herself since she had to do so much for me when I was home. I can honestly say that my parents and I have been through it all together and will continue to be there. Your husband needs to see and be prepared:). Men hate seeing their loved ones hurt and sick.
Fight like a Girl and concur this cancer!
Melinda
Posted on Well howdy there stranger : )
I was getting ready to send Martha a message and ask if she had heard anything from you.
It really is great hearing from you. I am very happy to see that you are back and are not “wallerin’” anymore….now it’s time to kick some azz and take some names….lol. Please keep us uptodate and all your happenings with the lab and what not. I’ve missed you my friend, you made my day today, lots of love,
Eli
Good for you taking control. There is something so powerful about feeling in control of our treatment plan and doing what it takes to make it happen. Congratulations and welcome back to life. I hope your enthusiasm lasts and keeps you upbeat and energetic for months to come. I know you have been beaten down a lot, so it’s good to see you back up and at it. Also, keep that husband of yours involved. He probably just doesn’t know what to do to help and support you. So ccontinue to involve him and coach him so that you can lean on him when you need someone to step in for you. I’m rooting for you and praying for excellent results. God bless. Gail
Continue to “have the last word” and be such an amazing advocate for yourself…you really are an inspiration to those of us just starting and making us (certainly me) understand that you need to be involved, question things and look out for yourself. Sending you all the best wishes that I can, Rachel
Posted on I got up this morning and you were on my mind. I was so happy to see your post and your sassy self back at it. Love to you always.
Posted on Hi T,
I was thinking about you yesterday, wondering what was happening with your ascites and chemo match. Sheesh—lab screw ups are really inexcusable but you are still the one holding the bag (so to speak). You picked yourself up, dusted yourself off, and found a different strategy; really impressive.
You’re not wallerin’ at all, and for sure you will have the last word.
Andrea
Tmay,
You never quit, patience has to be the most hated word for you at this time. I am so happy to see your post, you obviously needed to get your strength back up to go at this with another attack. I missed you so much, what a delight to hear what is happening. From this end you never heard so many people up in arms when they heard how long you waited and the results of that first test. Stay strong…Love, Sharron
Hi Teresa, I love you so much…. your courage gives me so much hope and your strength profoundly demonstrates we can face anything . . . I just hate the fact that the first test did not go as planned because the waiting waiting waiting frankly SUCKS big time. For me I think the not knowing, the waiting portions of this process are the most difficult to live through. The action part, the treatments despite the fear I sometimes feel tend to be more .. ummmm , matter of fact…. “get on and get going and get this part of this journey over so we can move on from this to the next…” was how I feel
and I totally understand and have felt from time to time that I did not want to come into this space. . . . I had to stay away for whatever reason…. so I listed to my heart and when I felt like hiding, I did, when I feel like connecting I do…. and when I want to avoid and deny I .. ummmmmm try not to check out too far… if you’al ‘catch my drift’—- in hillbilly terms…
I want to simply send you a big virtual hug and let you know how important you are to me for whatever reason. . . and that I hold you and your process close to my heart sending healing loving thoughts your way, regardless of if I post directly or not… your buddy, Frank
Posted on TMay—-Keep on bitchin—That’s the way we like ya!
Anna
Posted on 
Thanks for your support - 
