today

Brennan and I took a nap together. We walked around the house together. We walked around Costco together.

I did go to acupuncture this evening. I am currently going to acupuncture every week. Once right before each chemo session and once in between chemo sessions. It should help keep my white blood cell count higher than it would be otherwise, and it should minimize side effects. According to my acupuncturist (who is not only wonderful, but also went through chemo herself) just because the side effects were strong during one treatment, does not mean they will be strong for other treatments. She actually had her worst side effects in the middle of her treatments and not at the end of her treatments. Generally speaking, side effects do get worse over time, but it isn't necessarily linear.

And ... just to bore you a little more with my lack of side effects today, let's talk about the weather. The coldest average daily temperature in Chicago is on January 14th, and the shortest day of the year is December 20thish .... soooo it's all smooth sailing from here?

Pictures!

So, Eric and I had a fun surprise last night. Brennan became a much more confident walker!

Pic 1 - Our happy walker is very proud of himself

Pic 2 - B walking to his Dad.

Pic 3 - B in his super stylish new sweatshirt

Pic 4 - yes yes ... I took them all at one time!! It is misleading though. I took these pills right after my last chemo, but I don't take as many between sessions.

Update

The flaming mouth is gone. The stomach flips are gone. The body aches have decided to stay awhile. It was suggested to me to call my nurse practitioner today to tell her about the persistent aches.; I called this morning. She said that the body aches could be from my bone marrow working. Now, the bone marrow produces blood cells, so I assumed (you'd never know I didn't go to med school) that my bone marrow was working to make white blood cells. The blood is made up of platelets (clotting), red blood cells (oxygen transporters), and white blood cells (resist infections), and my white blood cell count was low before chemo number 2. Wouldn't my bone marrow be working to produce the cells that are low?

Assuming I'm right (big assumption), Eric and I found it interesting that acupuncture's main benefit is keeping my white blood count high. Now do you follow? Acupuncture is causing me to ache while it helps to keep up my white count. ummmm... yeah.

More importantly, the nurse practitioner told me to take a Norco (instead of Tylenol which can be dangerous if you overdo it ... Tylenol more dangerous than a narcotic? ummmmm); it's half narcotic and half tylenol and it relieved my body aches - yeah! It has since worn off, and I'm still doing AOK without taking more. I think I'm over the hump.

I'm not sure I explained the hump yet. My chemo will make me feel ill (generally) on the second to third day after chemo and it can last 3 to 7 days. Then I'm good to go until the next round of chemo. I started feeling ill on day 3 and it lasted until day 6ish. Hopefully, I'll get to bore you with how good I'm feeling until chemo number 3 on Feb 2nd.

On a very good side note, Brennan and I had a wonderful day. We walked to Target. We walked to the library. Brennan learned how to "Woof" like a dog! B and I had a blast. (Yes I was a bit loopy after my Norco which may have added to our joy.)

Chemo Number 2

It's been way too long. As you know chemo number 1 went well, but chemo number 2 was/is a little different. The actual process of receiving the chemo drugs was nearly identical to the first round (accept this time I went to acupuncture right before therapy). I had chemo on Wednesday at around 2pm. Eric and I left the doctor's office at 5:20. I slept extra hours on Wednesday night, but otherwise Wed and Thurs were just like other days. I felt fine.

On a side note - If given the opportunity prior to lymphoma, I could have slept 14 hours a day (yes yes .. it's true... it amazed my college roommates too). So, what does it mean if I sleep a lot post chemo ..... nothing. It's been almost two years since I had a good sleep (having a 1 year old and all).... I'm enjoying my sleep.

Friday wasn't too bad. I had started a new constipation drug (The chemo-drug Velban and the anti-nausea drug Zofran make constipation a hot topic. I believe that most patients going through chemotherapy have this side effect.) The new drug made my stomach do more violent leaps than it had done before. The drug is call Simulex (over the counter). Have you heard of it? I'm thinking about going to Mirolax for the next round. Besides a churning stomach, Friday was OK. Brennan kept me busy.

Saturday is when the flaming mouth and body aches started.

Flaming Mouth - Feels like your mouth and throat are on fire.
Body Aches - Feels like your body is aching right before you come down with the flu only more pronounced.

Saturday night at 4 am, I was beside myself. I think if the stomach upset, flaming mouth and body aches came one at a time, I could deal, but I was feeling bombarded. Though it hadn't been doctor sanctioned, I took two extra strength tylenol, and the body aches eased. I was able to sleep. I called my doc on Sunday to ask him about my aliments, and with the Steelers on in the background (good ... dedicated .... doctor), he told me that all was going according to plan. All was normal. He also told me that tylenol was AOK. Phewwww. So, armed with tylenol, my old mouthwash (I switched to a new mouthwash that was given to me during my chemo #2 --- bad idea), ICE, and large breaks between meals (food makes my mouth hurt), my aliments are tolerable. Bren and I are once again having a wonderful day. Phewwww. As Eric lovingly said - at least it gives me something to write about. No one likes to read a blog about how wonderful things are! Though I do hope to bore you with lots of wonderful days in the future.

Hair watch - I haven't lost a strand of hair yet. I've decided to keep it long until it starts falling out. The nurse told me that before my next treatment it should start coming out. We'll see ... nothing yet.

Cranial Prosthetic - Teaser

Here's a teaser of me and my wonderful friend Martha trying on wigs. It was definitely an experience that we won't forget. In fact, I think it should have been filmed .... but I can't do it justice at the moment.... must go to bed. Until next time....

Week following Chemo Number 1

This has been a wonderful week (the pics are from yesterday and today)! I did not expect to feel like myself after chemo began, and that's exactly how I feel -- great. I have spent the last 4 days with Brennan. He and I have had a spectacular week of mommy's groups, and playgrounds, and playing cars, and doing puzzles, and grocery shopping, and discovering new flavors (Brennan likes strong flavors like olives and avocado with lime, but we're still trying new things ... I'll keep you posted).

I have gotten into a rhythm popping pills. I take three antibiotics. They prevent pneumonia, shingles, and fungal infections. I also take Zofran for nausea around the time of the chemo, and Prevacid (which I'm not sure I need); it's for reflux and is supposed to help with nausea. And .... probiotics, vitamin D, multivitamin and mushrooms for immunity. Now that I'm writing it down, it doesn't seem like much yet it is definitely more than I'm used to.

I also wanted to tell you about a CD that I listened to prior to last Thurs (chemo). My acupuncturist (she's amazing) gave it to me. It talks about chemo as a blessing instead of as poison. In the 50's a person with Hodgkin's would have most likely died from the disease (My Great-Uncle Paul died in 1956 at the age of 46 from Hodgkin's lymphoma), in the 70's they would have done surgery .... today I should and do feel lucky. The CD has helped me adjust my perspective.

Fun facts - Jane Austen is suspected to have died of Hodgkin's lymphoma in 1817. Microsoft co-founder Paul Allen had Hodgkin's in 1983 (and non-Hodgkin's lymphoma in 2009). Mario Lemieux (Penguins forward - NHL) had Hodgkin's in 1993.

Chemo Number 1

Chemotherapy session number one was rescheduled to last Thursday (January 6th) at 2pm. I felt good all day leading up to the appointment. In fact, Eric and I went shopping in the morning and bought Brennan some snow pants. They are super cute, but I digress. We showed up on time for the appointment (me and my optimistic, loving and supportive husband of course), giggled in the waiting room (no recollection whatsoever as to what was so funny), and when our name was called we followed a friendly face back to the "port access room." I was all apologies for last week, but the nurse made me feel comfortable and assured me that last week just wasn't that memorable. I was sure that my vomiting episode the previous week would go down in the hospital's history books, but alas, I'm just not that special. What a relief! The nurse proceeded to put a 2 cm needle into my port. Now remember, the port is actually inside my body. To access it, the nurse simply sticks the needle through my skin into the port underneath. There's an incision line and a raised circular bump, so she knows exactly where to place her needle. Before she does this, she numbs the area with a cold spray, and I only feel a pin prick - nothing more. She takes a couple vials of blood, and then puts a 3 inch by 4 inch sticky, clear, plastic tape over the needle to hold it in place. We then go back to the waiting room.

What we learned later is that the vials of blood the nurse took have to be analyzed BEFORE the pharmacy will mix and send the medicine for my chemotherapy. My blood count must be at a certain level before the pharmacy will release the drugs to the nurse. The process takes about an hour, but after only a half hour in the waiting room, our name is called again. This time we meet with Cecilia; she's our injection nurse and will be our injection nurse for the duration of my treatment. Cecilia starts by attaching my IV and giving me Zofran through the IV. This is an anti-nausea medication. The same medication that she gave me the previous week when I was so sick. It was after the Zofran was hooked up that Eric and I broke out the box of Franco Mints that we had bought at Macy's while shopping earlier in the day for Cecilia and the other nurses and doctors. YUM!

When the chemotherapy drugs finally arrived, Cecilia had to dress up. Yes - dress up. She had a long gown with long sleeves and a high neck. She administers chemotherapy to 56 patients a week; the gown is to protect her from getting any of the drugs on her skin. Here's how the drugs are administered:

1. Bleomycin - Just for the first chemotherapy session, I was given a Bleomycin test syringe to make sure that I wasn't allergic to the drug. I had read how rare this allergy was, so I was able not to worry. This test syringe and most of the chemotherapy medication was administered as a "push." The injection nurse screws a syringe into the line connected to my port and simple squeezes or "pushes" the syringe until it's empty.
2. Adrianmycin - It's red and is also a push. It makes you pee pink or orange for the remainder of the day.
3. Velban - This is the one that makes you constipated and is a push as well.
4. Decarbazine - I believe that this was the IV that takes about 1 hour to drip into my body.
5. Bleomycin - Last was the Bleomycin which was also a push. Cecilia told us that the Bleomycin would be first in the future, but because we had to do the test syringe, we were given the drugs out of their normal order.

All in all, the chemotherapy drugs took 2 hours to administer. We were at the doctor's office for a total of 3 hours. I truly felt the same going into the office as I did leaving it. I felt fine all night albeit, I was awake most of the night. I told Cecilia the following day about my insomnia and she said that the Zofran had a steroid in it. That solved the mystery of the insomnia; next therapy session I will take some Adivan to help me sleep.

I've been fairly comfortable since Thursday. My stomach has done a flip flop here and there (I'm on three different antibiotics which don't help) and I've been sleeping more, but basicly I can't complain. I was told that day 3 after chemo was supposed to be the worst, but Eric and I ate a very large pizza Saturday, and felt AOK .... knock on wood. I know there will be days when I don't feel as good, so we've been very grateful for these healthy days. As my good friend Laura always tells me - If you feel good, don't fight it. Brilliant!!

The only setback we've had was on Saturday morning when I realized I was taking 10 pills a day. It scared me .... I'm the person who takes half a tylenol. I'm accepting the pill poppin, one day at a time for now. I'll let you know how that goes.

I actually spent a good amount of time shopping for a cranial prosthetic this weekend!! Lots of pictures to come!

Prognosis

During all of the excitement last Wednesday, I did ask my Oncologist what my prognosis was since he now had all of my tests back. The last of the tests (The Pulmonary Function Tests) were completed two days prior. He said that I was stage 2a and that I was mostly "favorable." I believe we talked about this earlier, but basically my Oncologist says that "favorability" is actually more important than stage. I had "favorable" scores on most tests. The only test that he said was not "favorable" was the CT Scan - I have Lymphoma in four lymph node groups. "Favorable" generally means no more than two groups. He didn't think this was a problem though; he gave me a 95+% chance of being cured from Lymphoma.

I will have another PET Scan in two months; it is important that this PET Scan is free of Cancer. A cancer-free PET will help me to avoid radiation which can cause secondary cancers 10, 25, 30 years down the road.

I'm baaaack!

I've been thinking about blogging and thinking about blogging, but why you ask ... why then Kari ... why haven't you been blogging? That is a very good question, and the answer is simple - I banned myself from the computer.

It all began on Wednesday morning when I woke up nauseous ... very nauseous. As I was being sick, we called my doctor to see if I needed to come in for my noon chemotherapy session (my first session). The answer surprised me but Eric was right on the money - YES! So, off we went down Lake Shore Dr. We grabbed the first wheelchair in the parking garage and Eric wheeled a very sick looking patient (I can only imagine) into the Cancer Center. There were many patients awaiting their chemo that looked at me and were very happy they weren't in my shoes. I can't blame them; I was a wreck. More vomiting ensued, but eventually they got me a room, gave me an anti-nausea medication, and I was nearly back to normal. I still had a low grade fever and was generally feeling "off." They decided to put off the therapy drugs (chemotherapy drugs that is) until the following Thursday when I was (fingers crossed) feeling better.


The question did however remain -- Why? Why was I so ill the morning of my first chemotherapy session? The verdict is still out on this question. It could have been one of many flu strands. Or it could have been Mastitis. Mastitis is a breast infection usually caused by engorgement or too much milk. I had too much milk because I was attempting to feed Brennan less and less milk everyday up until chemo; I couldn't feed him once chemo began as the chemo drugs would be in my breastmilk. My Oncologist wasn't sure whether or not I had Mastitis as he didn't deal with it very often, so while we were at the Oncologists office, the oncology nurse practitioner called my OBGYN's office who, in turn, called in an antibiotic for me and set up an appointment for the next day.

The next day the OBGYN took a look at this supposed Mastitis and wasn't convinced. He did however think it was best for me to focus my attention on the Lymphoma and not on my engorged breasts (smart man). He instructed me to bind my breasts (yes bind) for the next 5 to 7 days or until the milk stopped. The reason this old practice is no longer in use (or at least Dr. Kari surmises) is because woman who bound their breasts would rid themselves of breast milk, but would pick up a breast infection in the process. To combat this possibility, the OBGYN left me on the antibiotics. Side note - I don't actually have an OBGYN; I have a Midwife. This particular OBGYN works in the same practice as my midwife. I saw my midwife in the hallway on my way to the OBGYN's exam room, and she was not ecstatic about the breast binding. But, I chose my doctor for the day as I wanted someone who had a "M" and a "D"after their name. I think it was the right choice in retrospect; more about this at the end of this entry.

One side note that really pulled on my heart strings was that my doctor's talked. Yes yes, the OBGYN wanted to confer with the Oncologist, so he paged him in the middle of my appointment. My oncologist wasn't able to get back to him while I was there, but they did eventually speak that day. My OBGYN (yes yes... I now refer to him as "my" OBGYN) called me at home at 6:45 pm to tell me that not only were my two doctor's in agreement, but that my OBGYN confirmed my wonderful prognosis with my Oncologist.

In the end, I started to feel better in two or three days, but didn't stop producing milk for six days. I wasn't vomiting anymore, but I did feel ill through Saturday night. My breasts stopped producing milk the following Wednesday morning.

Why? Are you still asking why I banned myself from the computer during this time period? The answer is simple - because I was afraid that my nausea on the Wednesday morning of my first chemotherapy session was caused in part by anxiety, and I didn't want anything online line to exacerbate that anxiety. Silly - possibly, but it worked .... you'll see.

Setback...

Eric here... we hit a rough patch on Wednesday... Kari was due to start chemotherapy, but Wednesday morning, after a poor night of sleep and waking up with severe nausea with some bonus gacking along the way... we trudged down to the oncologists with the thought that we might have to delay treatment.

After snagging the closest wheelchair in the parking garage, we wheeled into the doctor's office to discover that Kari had a low grade fever and a slightly elevated white blood count along with other symptoms which given Kari's abrupt weaning process, led the nurse practitioner to suspect Kari's guess of mastitis might be correct.

So after pumping some fluids and anti-nausea meds into "Poly," Kari's nickname for her trusty portacath (which is a temporary IV access device that is inserted under the skin near the collar bone to ease the process of drawing blood and establishing IV's), Dr. Gordon came in to review the situation. Rather than start chemotherapy given Kari's condition, he recommended that we treat the mastitis with antibiotics and start chemo the following Thursday, which is the new plan.

He assured us that waiting a week would not affect the very positive prognosis, and might help avoid more major problems that could arise from starting therapy on someone who was already fighting an illness.

So the last few days have been spent with Kari dealing with weaning as well as taking antibiotics that have kept her appetite at bay and her stomach churning. New Years was celebrated early as we turned in before midnight after toasting with sparkling apple cider to a year dedicated to regaining health...