My Oncologist Left and I am not getting the support I need

My Oncologist left Rosewell. I'm not happy about it. I was given a choice of a male or female doctor or told I could just stick with the PA's for the duration of my chemo. The female did keep the same days as mine did so I wouldn't need to switch.

I actually heard this rumor that my oncologist was leaving from an elderly lady in the waiting room and when I asked her further she pressed her finger to her lips and said it was likely a secret.

My oncologist sent me a letter but it went to the wrong address, my home address. I've told the folks at Rosewell repeatedly to send my mail to my parent's but it keeps not happening.

Chemo#4 was so hard on me, I've been so sick. I was looking for support & sent the note.

I've been sick with a cold for over four weeks and had severe laryngitis last week. I tried email but apparently now that my oncologist left, no one else finds email an acceptable form of communication so I was basically ignored.

This is what I sent:

I hope you can help me. I can't call, laryngitis. I need emails for further contact care. I was never given emails of new contacts. thank you.

see note I am trying to send:

I need more support. I am not doing well. The last chemo wrecked me. I didn’t get a card for the PA that met with me and I no longer have an oncologist as she left and I have no new contact info for help. 

Respiratory Issues/Laryngitis

I’ve had a cold for over four (4) weeks. I cough all the time. I have severe laryngitis for the second time. My throat feels like there is a rubber ring in the back of it. My throat wasn’t even looked at the last time I was in after I said I’d been sick and had laryngitis. I do not have a fever.

Insurance refusal for mouth sore meds

I have more sores in my mouth. My insurance drug provider wouldn’t cover the prescription for the mouthwash unless they get a note from the doctor stating it’s a medical necessity.

Constipation, hemorrhoids, bleeding

I have very bad constipation and now have anal bleeding. I tried a stool softener, eating apricots & prunes, not working.

Reflux

I am having very bad reflux and don’t know what is causing it. I tried Pepcid, not working. I’ve heard Ranitidine helps with this.

Cold Sores

My lips are swollen and I think I am going to get a cold sore.

Sleeping

I continue to have sleep issues, mostly I believe because of the hot flashes and wonder why I was not prescribed Ambien CR - a time released sleeping pill that aids many that have the hot flashes during chemo like I do that wake them up.

Steroids

The first two nights after chemo, I had maybe one (1) hour sleep from 6am to 7am even with 2 ativan at 10pm and 1 ambien at 5am so I did not take the steroids the last day. I finally slept. I am so glad I don’t have to take those any more on this next four doses of chemo.

Glutamine

The PA I met with whose never I can’t even remember because I am so sick told me that Glutamine has no proven effectiveness for neuropathy, yet I found these studies.

Reduction of Paclitaxel-induced Peripheral Neuropathy with Glutamine

http://clincancerres.aacrjournals.org/content/7/5/1192.full

Oral glutamine is effective for preventing oxaliplatin-induced neuropathy in colorectal cancer patients.

Oral glutamine is effective for preventing oxaliplatin-induced neuropathy in colorectal cancer patients.

http://breastcancer.about.com/gi/o.htm?zi=1/XJ&zTi=1&sdn=breastcancer&cdn=health&tm=280893&f=21&su=p284.13.342.ip_p1026.33.342.ip_&tt=3&bt=0&bts=0&zu=http%3A//www.ncbi.nlm.nih.gov/pubmed/17405895%3Fdopt%3DAbstract

Again, I could use some help. I am displaced. I have no doctors where I am (Jamestown, NY) to call for an appointment. All my doctors are in NYC. I was counting on my oncologist for help.

Rosewell's website is difficult to navigate. I can't find emails for anyone else I might contact and I can't call. I have laryngitis.

xxxxx Real Name & ID removed

PS I finally found Dr O'connor's info on another website not Roswell's. I hope it works. I'ved added a few more hoping this gets through to someone

Aftermath of Chemo 5

*TMI alert*


I woke up with a fever this morning. I missed taking my kid to school for the first time and I missed my walk. I'm trying to get through this.

I thought the last one was bad but this is worse. I feel like someone kicked me in the vagina. This chemo is supposed to have cause neuropathy and it damn well better not cause neuropathy of my vagina. Am I going to get a friggin period? so much pelvic pain, I've never had this.

I've been running a fever (100-101.9) between doses of off brand tylenol and have sharp pains and aches everywhere, dry mouth, still coughing, dry mouth, sore throat, clogged sinuses and my ear hurts.  I thought maybe I had the flu but now after doing more research on the side effects of this new chemo, Abraxane, I am convinced it's from that.

Yes, I called Roswell Cancer Center and was told to take the tylenol unless something "strange" happened. Strange like what? Anything strange and I should go to an urgent care center. They didn't even know that diarrhea was a side effect right after administration of Abraxane. I'm finding out otherwise on the interwebs and yet I am told I shouldn't give too much credence to what I read on the internet. I don't believe I am getting the support and assistance I need from Rosewell since my oncologist left. I'll write about that more else where.  So what is strange? All this is strange to me.

I know I am bitching. It could be worse, I could be having this along with all the side effects of the steroids that I would have been given if I had the taxol. That would make me evil and the darkness would surely come back.

Anyway, I feel horrible. My kid laughed at me for still being in my pajama's when she came home from school. Geez, first time that has happened through all this and maybe ever. Mama gets dressed every morning but not this morning. The PJ's are Betsy Johnson! I look cute.They are worth wearing all day.

Good things I did
-neti potted
-plenty of fluids including gatorade mix & ginger with pomegranate juice
-ate grass feed yogurt
-decent lunch
-skipping dinner feel to blech
-I added some l-glutamine to my water
-lots of research on my condition
-worked on my blog

I can't spell for shit, chemo brain is taking hold. I need a spelling test every week like my daughter, all these new cancer related words I can't keep straight.

Chemo #5

Chemo #5
This was supposed to be easy by all accounts. No more steroids! No more red death! I was getting the good stuff. Just one drip bag, fast and easy. No more meds. It started out good. It was less than an hour before my little buzzer rang to call me for my turn for chemo, a miracle compared to the over 2 almost 3 hour wait I'd had for Chemo #4 and 2 hours for Chemo #3.

Abraxane instead of Taxol this time. Abraxane I am told is a better choice for me then taxol, although they are essentially the same chemo drug but Abraxane uses a different solvent that does not cause the severe allergic reactions or side effects that the taxol does. They'll be a rant about this and insurance companies elsewhere.

The nurse hooked me up to the drip with my port and all is well. Drip, drip, drip. I'm drinking my water as I am supposed to. I've been sick with this nasty cough for a long ass time, 4 weeks so I coughing and hacking over dosing on Ricola cough drops as they're the only thing that helps. I'm reading my novel, eating a few high protein Newman's pretzels and thinking about going to get some food afterwards, in the time in between my appointment with the genetic counselor to go over my BRAC results. Yeah. The drip is done, the nurse comes in and unhooks me and I start coughing, coughing hard and BLLLLEEEEECHHH!!! Vomiting! Luckily, I am isolated (not sure why) and I have my own bathroom or it would have been all over the floor. I puke in the sink. I puke in toilet. I puke again and again and again. God...awful. Nurse comes in and checks on my meds. Yes upstairs when I saw a PA (no more oncologist for me), they gave me a prescription for something for the coughing but I won't be able to fill it til I get home which is hours away. I recover from the coughing and vomiting, drink a small cup of cool water real slow and make my way up to my appointment in genetics skipping lunch. I have no desire to eat after all that heaving. The appointment goes well. They check my cafe au lait spots, measuring and counting as well as checking other possible signs for neurofibromatosis which runs in one branch of my family. They decide that further testing is unnecessary as I don't exhibit enough signs to warrant it.

We make our way downstairs to leave and I have to pick up my appointment sheet for next time and oh no!...upset stomach. I run to the bathroom. Yes, massive diarrhea. I keeping trying to get out but no. Repeat x 6. wtf. How am I going to make it home? I call upstairs to the breast clinic and tell them what is going on. They have be come up and give me two anti-diarrhea pills.

Finally, we make it to the car and I pass out. My mother said I didn't even wake up for the gas or tool stop.

Run over by a truck feeling when we get back to the house. I go to bed at 9pm.

In the morning, I think I may have to miss taking my daughter to school and my walk. I do it anyway. I get home and feel beyond hot flash hot. I take my temp. 101.9. damn it. I call Rosewell. They say they'll call back. I wait. They tell me my white blood count is decent so I need to take tylenol. My mother gives me some knock off. I'm too sick to go to my kid's violin lesson that night. I don't know if the fever is from the chemo or I have a bug. Folks at Rosewell are not helpful. If any thing strange or different happens go to an urgent care center is what I am told. They're not around but for 9-5 basically M-F.

Staging

Staging

The staging of the cancer, 2B, is a clinical staging (based on imaging). This is not as precise as pathological (surgical) staging. Due to the large size of my tumor (6cm+) it was recommended that I receive neoadjuvant chemotherapy. This means that chemotherapy is administered before surgery. When surgery is performed before chemo, they are able to test the tumor and the nodes microscopically to see if there is involvement and thus stage the cancer more accurately.

From all the tests I have been given, it appears the cancer has not spread (metastasized). I have nodes that are reactive, meaning that they are enlarged and responding to the cancer.

When I went for that first mammogram and ultrasound, the technician and doctor she called in made note of the enlarged lymph nodes. When I came back two days later for the biopsy, one of these nodes (the largest) was biopsied. It tested negative for cancer.

The two (2) simply means it has advanced locally.

Chemo #4

Chemo #4

Yesterday, I had my 4th AC chemo. It sucked. They were 2+ hours behind so I was there from 8:30am til 3:30pm. I felt like I was going to heave or pass out after the chemo was done. I'm not sure what happened. I've never felt bad before. I was shaking. They gave me an Ativan after then I passed out in the car on the way home.

My Oncologist is leaving :( so I have a choice of reassignment or to continue with PA's. Issues discussed before my chemo. 

Not Taxol - Abraxane next

I was then told that because I have bad side effects from the steroids, they are not going to give me taxol but instead I will be given a chemo drug that is the same as taxol but it's in a different carrier that doesn't cause this allergic reaction that most people have so I don't have to take the steroids.  It's a more expensive drug, Abraxane and I was told that insurance companies don't approve it unless there is a good reason for it. Anyone else have this?

 L-glutamine

When I met with the PA I mentioned that I was going to add the l-glutamine to my list of what I would be taking. She said she was going to talk to the pharmacist about it. She came back and reported that there is no evidence that the l-glutamine helps in any way but I could still take it. 

Blue nails.

I also discussed the blue nails and nail pain. I asked about the icing with the PA and my OC yesterday. They both said that the icing does not work yet I see others mention their PA or OC telling them to do it. Any proven evidence? I am so confused.

Chemo #3

We're a third of the way there and this time there was excellent news. My Medical Oncologist palpated my breast and said she was unable to find a definitive mass to measure and that the tumor was now a "thickening".  She confirmed my hopes. I can still fell a thick like mass in there but it's squishier now and difficult to make a judgement because I am obsessively touching my breasts several times a day trying to see if there is a change. I was desperate for my Oncologist's back up and I got it.


The happiness I felt as this news washed over me in the way too hot examination room (These rooms are usually freezing) like a hot flash of joy. This news is so good for my prognosis. Response to chemo with triple negative is huge and though I still have a long way to go, this is a huge plus.

I want to thank each and everyone of you who sent me good vibes, kind words, committed to shrinking visualizations, prayers and all that. I truly believe that collective positive thinking no matter what the givers beliefs makes an enormess difference. It's all about intent. Thank you for that.



After the visit with my ocologist and reassuraces. We hopped down to the chemo center. Where we were told to except an hour to 2 hour wait, minimum. They still haven't managed to organize the waits time for chemo. We were lucky, we waited just over an hour.

I had a room with view

More deadly chemo drugs

We made it back in time to take the Tulip to her ice skating lesson which is a 4 generation event. I need to get some pics of all of there. Much thanks to my Grandmother of discovering this least to skate program as the Jamestown Savings Band Ice Arena. Tulip is loving it.

Family cancer History

There is now a sharable google document with detailed history of cancers for both sides of the family. This document was created as a resource in preparation for genetic consultation I received at Rosewell on 10/11/2012. I spent some time working on it and interviewing many family members but I could use more detailed info. If anyone in the family has need for this information or would like to review it please contact me directly.

I also put quite a bit of time into creating and updating family history on Geni.com as a resource for the family. If you should ever need it, it's there and please add to it.

Shaving my head

Even with the buzz, my hair continued to fall out. I was using a sticky lint brush to take up the hairs that were falling out as was a recommended tip I'd found on one of the sites for people going through chemo. It worked for a while but then it was too much missing hair. The patchy bald spots were not me and I knew the day had come to shave it all off. 

I'd read about many methods for shaving it off but when the time came. I did it with a hot wash cloth, regular double edged ladies leg shaver and some more shaving cream I borrowed from my dad. When that ran out, and I couldn't see the back of my head any longer, Al happened to be there for once. He helped finish the back with his shaving cream while I sat on the edge of the bath tub worrying that he was going to cut me, gouge me or make me bleed. Horror stories of people having razor burn, skin rashes, cuts and all sorts of goriness after chemo head shaving had me on edge. Luckily, we made it. We did get some aloe vera gel which seemed to work and I continue to apply that.

cute?

sexy?

I can work this.