It’s been over ten days I’ve beeen living with this super hard mass in my left chest. Today I had my regular appointment with Dr. Schott, Oncologist at U of M. She sent me for an ultrasound, and the verdict is……………..! Right–no real answer. They are pretty sure it is not a tumor, but no idea of what it is….well. they have an idea. It might be fat necrosis, none of the docs are 100% sure.
SO-the plan is to watch it and wait……….
I’m almost embarrassed to tell you just how happy I am over a phone call with a NP from U of M yesterday. We talked for a while about blood tests and the near future (still on a two-week blood test schedule for as far as the eye can see). When we finished that discussion, she asked, “well, is there anything else I can help you with?”
I replied, “well, yea, actually there is…” and proceeded to explain my frustration with the latest recommendations for alcohol (none. no alcohol. don’t drink any.) from a local oncology nutritionist. She quickly replied, “Oh, no! We recommend no more than 5 to 7 alcoholic beverages per week for our breast cancer patients…” and went on to explain that she discusses this everyday with patients, is familiar with recent studies, and this is current recommendation at U of M. I can hardly even tell you how happy that news made me!! And yes, I did check..you can save up your wines, and skip a few days so you can have two or three on a weekend night. Just no more than 5 to 7 per week.
I can do that. Not my favorite lifestyle change that has come out of all of this, but I can definitely do 5 to 7.
Of course I realize this is searching for the truth you want to believe. I sure hope it is the truth.
I am going to try to work full-time this week, except for Tuesday, when I get to take the little hike up north to U of M to see Dr. Schott and NP Joan. Wish me luck on both accounts.
I have a post almost ready with a new picture of my fabulous new hairdo…stay tuned!
Yes, I know I haven’t posted in awhile and thank you for calling to see if I am OK, but it is just that the fatigue of four chemo’s is real. When Dr. Schott said the effects of chemotherapy is culmulative, she wasn’t kidding. Actually, she (and NP, Joan) were so right on all their predictions, that I will just believe them completely from now on.
This fourth round of chemo hasn’t been as horrible as round three was, but still, itchy hands and feet, no hair, searing hot flashes, fatigue, and bone pain. Good news on the bone pain though, if you eat ibuprophen like candy, it is actually bearable. I took Joan’s recommendations this time and have been downing multiple Motrins at very regular intervals, whether I have pain or not, and it is working pretty good. No collapsing because of intense and sudden pain this time around. Countin’ my blessings however small they may be!!
The hot flashy thing is a trip though. Last night (for kicks) I recorded each time I was wakened when I voilently threw off the covers and dove for my water bottle. My bedside post-it note pad has the following times recorded;
11:00pm, 12:24am, 1:53, 3:30, 4:19, 5:46,
and then a little break…7:30am
Then, all day, I only had two, maybe three hot flashes. Whats’ up with that? Why does the body save the fireworks for the overnight hours? So they can be seen against the night sky? Is this some kind of sick entertainment for extraterrestials we are not aware of??? (I have chemo-brain…….I’m allowed to go off on whacky tangents.) If the body seeks balance, this does not seem to be the way to do it.
As if that is not enough…
I am still trying to process all that was said during the last U of M visit as well, namely the option of participating in the “Phase III Trial of Bisphosphonates as Adjuvant Therapy for Primary Breast Cancer” Clinical Trial. I am trying to find non-fatigued time to do some independant research on this, but the basics are: Bisphosphonates seem to strengthen the bone, and in previous studies of women who did not have chemotherapy, they provided a 30% better chance of NO relapse of breast cancer (in the bones, a common place for relapse of BC apparently). Sounds good, right? But, not so fast….. there is this whole world called “risks/benefits” analysis……of course bisphosphonates as a drug/adjuvant therapy have risks, as well, and one of the risks is osteonecrosis of the mandible, and to a lesser extent the maxilla. (I think this means death of the jawbone.) Of course, this occurs in a small percentage of the people who take this drug, but enough that my dentist wants to talk to me about it before I sign up….so back to the tooth man next week (again). Part of me really wants to go for this one, because a recurrance of cancer in the bones just sounds so….much worse. Can’t really just cut ’em off like we did with the breasts. And if my jaw bone goes south, well that’s bad I suppose, but not as bad as dying from bone cancer, right? I really hate these life and death decisions….I’d like to go back to deciding what kind of wine to have with dinner.
Just being able to have wine again will seem like a gift. As soon as that mettally-mouth thing goes away, I’ll have another small blessing to count.
Tomorrow I get to meet the Radiation Oncologist, Dr. Rubin, for the first time. I have heard wonderful things about him. I sooo hope I like him and his recommendations. I’ll let you know here first.
Well, I made it to the infusion room, and got incredibly lucky to get the private room again! The premeds went in with no problem, and Taxotere was next, again NO PROBLEMS! It is now 6:45 pm and the Cytoxin is about halfway done, and I’ll be soon leaving Infusion Center B1 for the last time. I love U of M, the nurses are all exceptionally skilled, today Julie is my infusion nurse, and she is great. As much affection as I have for the people here, I really hope to never, ever have to come back here again. I am grateful for the people who make the treatment of this disease their lifes’ work, but cancer still sucks.
good news first-
I have completed three out of four chemotherapies sessions!!! Only one more to go in three weeks!
My nurses at Uof M are incredible. I love JOAN, Nurse Practitioner to Dr. Schottt, and I LOVE TERRI, who is always smiling and happy and treats you like you are her first and only customer of the day, and I LOVE the guy at the pharmacy, and my Chemo nurses always do such a good job of caring for me, even though I know they are SO BUSY!!!
My chemo today went off without any bad reactions this time…….but they really threw all the meds in they could think of first before the taxotere, which is behind the “badjuju” . Only then, it made me way more tired.
Bad news is they cancelled my 10:30 am appointment with Geeta, the PT. Big disappointment. Could have left at 11:00 or so instead of 8:15 am……
No one gave me any compelling advice one way or another on the Radiation issue. I guess I really am on my own with this.
Also, my being gone so much is affecting my family poorly, too. That make me sad. I’m trying hard to kep up with everything AND have time for myself to focus, study, and meditate, but I guess it is not working out too well. :^( Any ideas?
Tomorrow I’ll tell you what Dr. Schott had to say about radiation, and the visit to Renee’s Survivor Shop.
Tuesday
So after five days, I am finally able to listen to the tape of my visit to Dr. H, Radiation Guy at U of M. It doesn’t really help much.
I had pretty much over the weekend decided to stop whining so much and just suck it up and at least take a positive attitude about the whole radiation thing. But listening to the tape of the consultation, well….you tell me what you think….here are a couple direct quotes:
“”you fall into a grey zone regarding the rules of radiation after a mastectomy” and “there is a lot of discussion in the literature amongst the experts of what is the right thing to do in this setting, because there are some downsides to doing the radiation” . Neither one exactly inspires me to jump up on the table and get into position.
On the other hand….I just want to be the best patient I can be, be informed, proactive and do everything in my power to rid my body of these despicable cancer cells. I just keep thinking about seeing Louie and Charlie graduate from High School, and then if they choose, college, too. What can I do to ensure that I get to see those things? Is it choosing radiation as part of my treatment plan??
Lou and I have been reading so much about this. Looking for original studies, information prepared for the layperson, and talking to people who have been through it, and dammit there really is no clear cut answer.
Over the weekend I was surprised to see on BREASTCANCER.ORG : Radiation may be recommended if four or more lymph nodes are involved OR for premenopausal women, at least one lymph node was involved. hmmnnnn this is the first time I have seen the “premenopausal” clause…..I guess this is because if you still produce estrogen, it provides food for the cancer cells (if your cancer is estrogen receptor positive, that us.)
Wednesday
Had three good visits today. First, I had a “Healing Touch” appointment with Veronica at The Victory Center. As usual, it was insightful, calming, relaxing. She is great, and reminded me (again) to come from a place of unconditional love, and to (again) live in the moment. To ask the universe the question and wait for the answer. I already know all of these things, but at this juncture, I need someone to remind me of them. I really need a Veronica in my life about every other day or so right now.
Saw Dr. Barone, my Plastic Surgeon for my last expansion on my right side (150 cc’s). To all of you outside of Ohio….wow, too bad you can’t see this big girl. She’s a beaut in a round-expansion implant-kind of way. I’m thinking I gotta be careful about bumping into things until I get used to my new perameters! Only thing is, I really got to step up buying a boob for the left side, because I am lopsided in a really dramatic way now. God, I hope they don’t have to special order them. I hope the boob store just has them “in stock”. Guess that should go on the “to do” list this week right after I figure out how best to keep living. But on the serious side, Dr. B provided the time for a serious talk about cancer options, specifically radiation. I really appreciate this doc for his time and willingness to talk, and look me in the eye when he answers my questions. Plus, he has the best nurses ever. And, he has the nicest office staff, too. Thanks Suzi for taking additional time with me today. It meant a lot to have that additional conversation. You are the greatest!
Last good visit was with BFF Tahree. We just talked, drank wine, visited a neighbors’ garden and then out to dinner. What a good pre-chemo evening, to talk to other “girls”.
Thursday (tomorrow…or by the time this posts, today)
Get records for second opinion. See Geeta, U of M Physical Therapist Extraordinaire. Blood work. Appointment with Joan, NP and Dr. Schott, Oncologist. And if I’m lucky and blood work is good, chemo at 3:30. Send good energy my way…..I’ll be in Ann Arbor..
OK, so now I am getting a serious case of anxiety about a visit tomorrow with a new doc for me…Dr. Hayman, Radiation Oncologist. I have been sending him vibes of “no radiation for Kay-Lynne” but I don’t know how strong my super-powers are this week. And, to top it off, I think I have not researched everything I should have in preparation for this visit. Because, of course, I don’t know where to begin.
All I know is, if I have to do radiation, it will complicate the already messy business of breast reconstruction. I just want to be done with the chemo (only 2 more treatments to go!) move on to the endocrine therapy (more commonly known as hormone therapy) and try to claim my life back.
I know it has only been 6 months since this roller-coaster ride began, I shouldn’t be whining about it. I’m doing pretty good and I should just be thankful. And I am. Just want to skip being irradiated.
If you have any helpful hints for me…..questions to ask the new doc, please don’t hold back.
Well, it is two days post chemo number two. YEA, lucky for me, I am halfway through my chemotherapy regimen!! Now I have that awful crappy taste in my mouth, and I am grateful that I have no nausea, but the only way to get the “dirty pennies” taste off of my tongue is to eat something stronger than dirty pennies. I’m thinking really rich dark chocolate truffles sounds good right now. Too bad the “food therapy” is only momentary.
So Thursday was an interesting day. Started off early (8:30 am) with a cool lady, Cynthia, a U of M Orthotics Fitter. She measured and fit me for a compression arm sleeve for the left arm where all the lymph nodes were removed. Do I really need it? Hell, I don’t know, but if “Geeta the Great” (my PT) said to wear it, I’m gonna wear it, or least try to wear it every day. Can’t hurt I suppose, and the discomfort in that arm, underarm, and down my side is significant enough for me to do whatever anyone smart suggests.
Then, back to the U of M campus for: Blood Tests, appointment with Joan, Nurse Practioner, and of course, Chemotherapy Infusion. Somewhere in there I had time to go to the “U of M, Comprehensive Cancer Center, Patient Education Resource Center” which is a fancy name for a teeny tiny Lending Library for Cancer Patients. A very small room with lots of books for people like me. I loved this little place! So much information and so little time. I wish I could just ignore the world and readreadread all about all this business. Cancer is pretty interesting on a cellular level and the treatment options and medicines are absolutely fascinating as well. Here is something I learned while waiting: “Toxicity from Chemotherapy: …..Most drugs can cause nausea and vomiting by stimulating the chemoreceptor trigger zone and emesis center in the brain….”** Wow. Did you know there was an emesis center in the brain? I sure didn’t.
So, when I was finished with Super Nurse-Practitioner Joan, they moved my chemo up an hour, and it was quite a dash to get food and carry it to the infusion center. Didn’t really care for that, I still think meals should be revered and enjoyed, even meals consumed in hospital cafeterias.
Had to get to the different infusion area, the “Med Inn”. Mary was my infusion nurse, and brought a load of meds to my tray. Holy cow there was a lot of stuff there! Here’s what I have in my notes: Decatran, anti-emetic for the chemo trigger zone. Aloxi, a long lasting (3 days) antiemetic which binds to the chemo receptors in the gastrointestional tract. Benedryl, an antihistimine, “just in case” since I had an allergic reaction during the last infusion. Zantac, I think to also prevent an allergic reaction. And one more, Ativan…this is an interesting one….a sedative to prevent “anticipatory nausea”. This drug prevents the development of patterns in the brain, like, oh, I’m here and I’m going to feel sick….it stops that pattern of thinking. It took quite a while to get all those in, of course my quizzing Mary about every detail really took time, too. But you know, she was so patient with my questions, and so incredibly detailed with her answers. I really appreciate that.
About a minute after she walked away from initiating the first chemo med, Taxotere, I heard a little panic in my voice as I called out, “Uh Mary, I’m having a hard time breathing!” This time the reaction was more scary than the first, but again, quick reactions by nurses go a long way to soothe the nerves. She immediately turned off the Taxotere, came back with another medicine to counteract the reaction, and eventually got the drugs rolling again, v e r y s l o w l y.
“Infusion.” I don’t know why, but the word really does not set right with me. Hot tea is “infused”. But the idea of infusing my body with powerful medications….. Maybe it is because I’ve never been sick before, but the concept is one that I still have to wrap my brain around. I wish I didn’t have this need to understand, I wish I could just accept my doctors directions and forget about it. Oh, there are a lot of things I wish right now. But nevermind.
Finally, all the Taxotere was in and Mary was off shift, and apparently my brain took a little leave of absence because I didn’t even get the name of the nurse who started the Cytoxin in my IV. That was certainly uncharacteristic for me. But by this time, I was kind of weary, and couldn’t focus on the beadwork I had been trying to do, got my laptop out and tried to write, listened to a “TED” lecture instead, and then I think I dozed off. I think it was after 5 pm when we were all done, and while that would have been a short work day, it seemed like a long “hospital day”.
It all seemed so anticlimatic and kind of depressing. But a lucky kind of depressing. I made it through, and now I am halfway done. If the universe is kind to me, I won’t have to do chemo #2 again.
**Chan, Helen S. L. Understanding Cancer Therapies. p. 47. Copyright 2007. University Press of Mississippi.
Kaylynne50's Blog 
Success with chemo #2
July 16, 2009Just a quick post here: I got lucky today, and was able to get chemotherapy #2 today! It came with a bit of a price though…had to endure another sudden and dramatic reaction to the drugs. I’ll explain more in the next post. I’m actuallly tired and going to lay down and maybe I’ll be lucky and sleep will come to me
Tags:breast cancer, cancer comments, chemotherapy, gratitude, University of Michigan
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