A whole bunch of biopsy slides in hand...

I picked up the biopsy samples/slides today from the Redlands Community Hospital pathology department. Wow! 11 containers with four slides in each. These are samples from my original biopsy and the new one. The package also included the immunohistochemical report (pathology 2nd opinion) and it says clearly this new cancer IS non-Hodgkin follicular lymphoma and nothin' else. Kinda hard to argue with that type of information. Ok, still working on the "full blown" 2nd opinion - can you say tumor board? Spoke with the proton radiation department at LLUMC today. The pathologist there wants to meet with me. I have ordered copies of all of my oncology files - those with these slides will go to them as soon as I get the rest of the files. I also registered for my upcoming surgery while I was the hospital. All we have to do on Thursday is walk in the door - and get cut. :) Well, I get cut, Brad just waits. Other than this baloney, life is fine. Still waiting on those darned girls to deliver their crias. The two youngest (both Hawke babies) are getting big and racing all around the place.

Nice weekend and rambling thoughts

What a lovely weekend we just had. The weather was perfect - mid-70s. We slept with the windows open. We got lots done around here. Brad began assembling the cabinets for the kitchen. They are very nice. We still need to find drawer pulls (Have you seen what they cost? It's jut insane)and pick out some granite for the countertops. There is still lots to do. Brad pretty much has the wiring done and all of the overhead lights installed. He put in the new "on demand" water heater. I've been working in the "new" spare bedroom. I had previously painted two of the walls a very pale gray (can't recall if I've already talked about this so forgive me if I have) and the window frames are white. I've been working on taping and mudding the drywall and I'm almost done. We moved the large metal storage cabinets out of the spare bedroom so we can spray he texture on the remaining two walls and then paint them. Once that's done Brad is going to put a wood casing around the closet door and we'll start working on he floor. It's gonna be epoxy with a metal flake in it. Kinda utilitarian but nice. We'll find a colorful rug to put over it. We found some nice honey comb shades in a darker gray color. The contrast will look great. I'll add a splash of color with the bed coverings. We'll have a little office in there too and a small living room in the front of that apartment to entertain our friends. In the kitchen we will start sealing wood for the ceiling. It's gonna be pretty much like what we did in our bedroom suite. I just love it. I saw Dr. Mehta Friday. He told me how to get samples of my biopsies. We talked about the possibility of my current cancer transforming into something more aggressive. That's certainly possible. I also worry about my Hodgkin lymphoma relapsing. That's certainly possible too. It's probably pretty reasonable to be feeling, well stressed right now. I am looking forward to another opinion. As I have said before, I just want to be sure the diagnosis is correct. I want to talk to some other doctors and see what they think I should do to treat this new cancer. I've read here is a chance to cure it with an early diagnosis such as the one I have. I want to persue the possibility rather than just going for a long remission with rituxan. I'm afraid if I have, for example a 7 year remission with rituxan, and then it transforms and becomes aggressive I may be too old to be considered for an ASCT. I am dreading the surgery to install the port-a-cath which is coming up on Thursday and then on to my first rituxan treatment the very next day. To say I have some anxiety would be an understatement. I am hoping that incredible nurse Phoebe will be there to put in my IV for the surgery. I'm also hoping the anesthesiologist uses vercid again. I do NOT want another alien abduction memory! I'm sure it's an outpatient procedure so I will get to go back to our comfortable home when it's over. Friday is going to be a LONG day. It will probably take 6 or more hours for the rituxan treatment. They really worry about allergic reactions, particularly the first time. I've read they will give me a hefty dose of IV Benadryl which will likely knock me out for most of it. I've been thinking of getting numbered tattoos for all of my surgeries. Where to put the number for the tonsillectomy is a litte problematic. Oh forget it, it was just a bad idea. :) We have several alpacas due to deliver. Sure as hell they will all wait until I'm in surgery or having my treatment on Friday to deliver. The following females are due: Sehiya bred to Mr. Cash, Lady Hawke bred to Mr. Cash, Ana bred to Snow Hawke, Sweetie bred to Mr. Cash, Blueberry bred to Mr. Cash, Roen bred to Mr. Cash, Delight bred to Mr. Cash

1st day back

Thank goodness it's over! Everything went well. The students were very sweet and I was glad to see them. Carole, Renee and all of my student assistants did a great job while I was gone. I really appreciate their efforts. My office was in order and everything that needed to get done DID get done. A girl couldn't ask for much more than that. I returned to lovely cards, two gorgeous origami roses folded by student assistant Paul Jang and an amazing Edible Arrangment that I understand was the brainchild of student assistant Sean O'Hair. I have an appointment to see Dr. Mehta Friday morning to talk about getting a full blown, second opinion. I'm hoping either he,or Dr. Kubba will arrange for all of my records, slides and tissue samples be assembled for a tumor board to evaluate. I'm nervous about the upcoming surgery to implant a port in my chesT. I understand infection isn't as likely with this sort of port but what if I develop a blood clot or it just stops working. I need to learn how to maintain it. Ick!

Back to life

I'm back to work tomorrow. I'm ready. We have four more weeks until the end of the semester. Carole and Renee did a great job of covering me while I was gone but it's time to step back in and finish things up. I'm looking forward to seeing my students and I know I have a stack of about 60 research papers to read. Oh joy! Renee and I will continue to pack and move our offices and the microbiology lab into our new space. The next month is gonna be busy. I'm not sure if I mentioned in my previous post but I will just receive one rituxan treatment for now (May 4th) and we will wait to continue the treatments after we get the second opinions on my case. I'm nervous, and a little bit glad I'll be getting a port installed. I'm NOT happy to be having another surgery but I am happy I won't have to freak out about the IV for every treatment. I'm anxious to get the second opinion... I'm worried the local pathologist could be wrong and I actually have some horrible, aggressive, terminal lymphoma. Sorry, don't mean to be paranoid, just want to be sure :)

More news and more questions

We (Brad and I) met with Dr. Kubba and Dr. Rau today. We met with Dr. Kubba this morning. He confirmed what we'd read in the biopsy report - non-Hodgkin B-cell follicular lymphoma. He had no idea if it was there with the original hodgkins or if this is a new cancer. He thinks it's new. This is really very weird. While this variety of non-Hodgkin's is pretty common what isn't common is it developing after having classic Hodgkin's. More on this later. Anyway, assuming this new diagnosis is correct Dr. Kubba said the prognosis is excellent and represented this type of cancer as moderate or even low grade. I am stageI/II (likely I) and grade 2. The grade 2 thing refers to some physical characteristics of the sample. I'm still learning about grading non-hodgkins. Dr. Kubba said we will get a second opinion on how to treat my disease. There are several treatment options available but he thinks a monoclonal antibody called rituxan WITHOUT chemo is the way to go for now. It targets CD20+ receptors on both cancerous and non-cancerous B cells. He believes the cancer is indolent but if that changes we may have to also step up the treatment. My understanding of what will happen now is this: port-a-cath (OMG, ick!) inserted on May 3rd. On the next day I get my first rituxan treatment. There's good and bad news here too. Should be low side effects - no vomiting or nausea (Really??) and no hair loss. Possible bone pain and fatiue. Oh yeah, one other thing. A fatal brain infection is possible too but that hardly EVER happens. Holy crap! The first rituxan treatment is a bit tricky. There is a big long list of unpleasant things that can happen during the infusion (4-6 hours) and in the first 24 hours after its done. Hardly any serious problems if you get thru that window with your pants on (so to speak). I will receive 4-8 of these treatments, 1 week apart then I'll get additional treatments once every 3 months for a total of 2 years! IF my original Hodgkins doesn't relapse and IF this new cancer doesn't become aggressive I could live for decades. Wow! I want to discuss having the two biopsy samples (original diagnosis and the recent sample) evaluated by another pathologist that specializes in lymphoma but will do that in my next post. More about meeting with Dr. Rau in my next post too. I'm pooped. The last couple of days have been challenging.

Good news and bad news...

Well, it's mostly bad but it could certainly be worse. I finally got my hands on the preliminary biopsy today. I have cancer again. Damn. Kinda weird though... I have not relapsed but rather have a new cancer. Still lymphoma but now I have non-Hodgkin B-cell follicular lymphoma. The good news is that it is likely indolent (slow). We are still waiting for the final biopsy report and then can be sure but right now it is looking indolent. That means I may live for many years BUT I will need treatment (right now it sounds like a combination of monoclonal antibody therapy combined with chemo). This treatment is gonna kick my ass but it's not like i really have choices. :) I will probably need to be treated on and off for the rest of my life. There is a chance the cancer may become more aggressive at some later date. That would mean more aggressive treatment. Dr. Kubba stressed a couple of things to ease my mind. 1. He won't need to take a bone marrow biopsy - yeah! 2. I am not going to need a stem cell transplant, now or almost certainly in the future - YEAH! Dr. Mehta and Dr. Kubba went out of their way to call me personally today and to try to put my mind at ease. I can't express how much I appreciate them both.

Stick a fork in me

'cause I'm done... Sitting still anyway. This is a frustrating time. I'm feeling pretty well but can't do much because of the surgery. We went out for breakfast this morning, that was a nice diversion. I'm off work until 4/20/12. This is gonna be a challenge. Carole is working her butt off covering my classes and I'm bored. I'd better hope she doesn't read this. :)

Rookie mistakes - part 4

If you are going to have chemotherapy, get a port. I did 6 cycles of ABVD (which is actually 12 treatments) and I chose not to get a port. I was afraid of the port. It gave me the creeps. I was terrified of it becoming infected. That turned out to be a bad decision, both short-term and long-term. The first few chemos went pretty well with my then virgin veins. As my course of treatment progressed getting an IV in me became more and more of a challenge. Trust me, those oncology nurses are GOOD but chemo is so damaging to your veins that it's a down hill spiral. I even had to postpone one treatment because the nurses just couldn't get the IV started. The other thing I didn't consider was - the rest of my life. Even years after completing chemo your veins do not improve so every subsequent blood pull or IV you need is going to become an ordeal. Just get a port. If you do decide not to get a port when you have blood pulls or IVs in the future insist on only the most skilled person trying. Do not accept it when the nurse says that she is very good. Ask for a phlebotomist or whomever else is the most skilled person in the facility. You should not have to be tortured to allow another person to indulge their ego.

Rookie mistakes - part 3

Prolonged vomiting after chemo is NOT normal. I know that before becoming a cancer patient I always equated chemotherapy with vomiting. Don't get me wrong, I did plenty of vomiting during chemo but after my second treatment I vomited and was unable to keep anything down for three days. I couldn't even get out of bed. I wound up in the emergency room with a massive DVT in my leg. It was painful and terrifying. It was a major setback for my recovery. When my oncologist learned what happened he asked why I hadn't called him. I had no clue this wasn't expected. He said that if I had called he would have had me come to his facility for IV fluids and IV anti-nausea drugs. I had no idea. If you are experiencing prolonged vomiting, call your oncologist. After that rough spot things went much smoother. It's different for everyone but my "normal" after chemo was to experience nausea and vomiting about 4 days after my treatment. I would just wake up vomiting BUT after a brief bout it would pass and I would be ok until the next morning. 

Rookie mistakes - part 2

If you require opioid pain medications you almost certainly will become constipated. Just assume this is true and be proactive. If you are able to eat be sure to have enough fiber in your diet and ask you doctor about taking a stool softener such as Colace. Manage the constipation before it becomes a real problem. You might also consider a product such as miralax. Be careful about overusing laxatives, they are "addictive" and this is not something you want to have to take for the rest of your life. 

Cancer: Rookie mistakes and how to avoid them - part 1

When you have chemo you will most likely loose your hair. It's really not that bad but it certainly does contribute to you not feeling "like yourself." What bothered me most was all of the times people called me "sir." I am female and given my build my gender is not very questionable. I wasn't comfortable wearing a wig. The darned thing was scratchy and I was afraid it would fall off. I realize that wasn't likely but I couldn't shake the feeling. Also, when I looked at myself in the mirror with a wig on it just didn't look right. I either tied a scarf on my head or wore a cap. It's funny how many times people don't really look at you... Near the end of my treatments I felt well enough to drive and even make short forays into the world. One day I went out to buy a pair of shoes (my shoe size increased at least 1/2 size and very few shoes were comfortable at this time). I picked out a pair of shoes - obviously women's shoes - and when I paid for them the checker called me sir. She never even really looked at me. I'd imagine by baldness, the cap and the tiny earrings I usually wear confused her and made her uncomfortable. I have learned since then to wear larger or dangling earrings to avoid confusing people. 

Home again!

We just arrived home about a half hour ago. How wonderful! Thank you to everyone for the great cards and emails. I pretty much had a running dialog with Sara Jane by email the entire time I was gone. Carole and Bud are coming to visit in a few hours and Lori Arnold is bringing us Easter dinner at 2 pm. There was a great card waiting for me from Ruth, David and Caitlyn Gomez when I got here. I certainly am lucky to have such great friends. BTW, Brad survived his food poisoning. :) I'm feeling pretty well, minimal pain. Mostly just discomfort like when you do too many abdominal crunches. I've got two cats curled up next to me on the bed and I survived being greeted by our sheltie Jazzy who always jumps right on my stomach when I've been gone for any length of time. Well actually, she does that every time she greets me.:) The new babies look wonderful and I was impressed with the work Brad got done in the kitchen while I was gone.

Clarification of my last post!

When I said we mutually pissed each other off I meant me and the hospital staff, NOT me and Sara Jane. :)

IV Anxiety

What follows is an excerpt of an email to my dear friend Sara Jane. I hope you'll all forgive me for ranting. We mutually pissed each other off yesterday. Don't recall if I've mentioned that pretty much all of my veins are destroyed from my previous chemo. Pulling blood, and even more so, setting an IV has become a huge challenge and an enormous source of anxiety for me. An absolute angel in pre-op got it started Thursday. My heart sunk yesterday when I saw it had blown. Surgeon wanted another put in. They were giving me minimal fluids but the pain meds were administered by IV. I have also developed intolerance to most oral pain meds - excruciating pain in my diaphragm area followed by violent vomiting. Not so fun. Anyway, I was promised that someone most especially skilled in this art would come replace the IV. When she arrived I explained my anxiety and she assured me she "was awesome" then proceeded to JAM the needle through my vein, into my muscle and when that didn't work she kept moving it and jabbing around the general area of my now growing new hematoma. Well, that pissed me off so I ordered her out of my room and forbid her to enter it again. Some muckiety muck came in and said they were sending up someone with an imaging device to put it in. Two hours later they come back and tell me, sorry - that department is closed so no go. Awhile later a gal from ER comes in, examines my veins, turns and runs for her life. By now I am PISSED and in pain. I start to create a stink, insisting on filing a formal complaint. By now everyone has decided that maybe we should just skip the IV :) but they had to call the Dr. four times before they were able to figure out a pain med that I could tolerate. I'm hurting pretty bad by then and I hate the world. Finally got the pain med down me and I also submit to taking an Ativan (sedative/anti-anxiety drug in case you don't know) Oh yeah, and poor Brad is home with nasty food poisoning and we have a girl (late term pregnant) who is worrying us so maybe you should just come and kill us both. Seriously, if you are really my friend you would do this for me. :)

Still kicking

Here I sit in my bed at Redlands Community Hospital on the other side of my surgery. I can't beieve how little pain I'm experiencing given the size of the incision. Everything went well EXCEPT Dr. Rau told Brad the lymph nodes he removed looked like Hodgkin's nodes, not scar tissue or inflammation from an infection. Definitely NOT what we were hoping to hear. No comes the long wait - until we get the pathology report. Sigh. On the bright side, as I said, the pain is minimal and I was able to walk around the floor twice with Brad and I can get in and out of bed on my own. Because I'm doing so well Dr. Rau bumped me up to solid food. Yeah, no broth and jello. :) Renee and Brad have. Other brought me the most lovely flowers and my BFF Carole will be here around noon for a visit. Its wonderful to have so many great friends. In addition to visits from Carole, Bud and Renee I have heard from Lori Arnold, Sara Jane Mclennon and Jackie B. Ok, so when will they spring me from this joint??

Biopsy surgery today

My surgery is scheduled for noon today. We have to check in at 10 am and then Dr. Rau does his thing at noon. It's expected the surgery will take about an hour and a half. I can't believe this is happening. It's like a very bad dream and I can't wake up. Speaking of bad dreams, silly ones anyway... I dreamed I forgot I wasn't supposed to eat today and I had breakfast. I woke up in a panic. :) Carole and Bud will wait at the hospital with Brad today. I sure appreciate them. I also appreciate all of the lovely cards and emails of encouragement people have been sending. Thank you very much. It's good to know people are thinking about me. My favorite was from Sandy Wallace and Michael Frankel,because of the stamp. It was one of those custom made stamps with a photo of them both riding camels. They went to Egypt a few months ago - my fantasy trip. I will be in the hospital for 4-5 days so hopefully home by Sunday or Monday. I have to mention an alpaca thing. Our female Foxy was due a few days ago. We were worried she wouldn't have the cria until I was in the hospital. I was out in the pen visiting with her and the other pregnant girls this past Tuesday and I told Foxy "I sure wish you'd have that baby now so I don't have to worry about you while I'm gone." I went back into the house and about 1/2 hour later I heard her complaining loudly. I looked outside and it was obvious she WAS in labor. A few minutes later and out popped two little white feet. I helped her a little and we delivered a gorgeous white female cria! She was up and nursing within 1 1/2 hours. What a relief! Her name is AVC Hawke's Electric Daisy. Daisy to her friends. I'll post a photo of her when I can.