AQ vs. BC

Chemo round 3, check.

So I think I made it through the rough patch with the third round of chemo (knock on wood), and I am moving towards my last treatment! Like some others have said, #3 seemed a little less harsh than #2. I am tired, but just giving in to sleeping a lot.

When I unwrap the PICC line for Jim to flush the meds through, I like to say “go, go, gadget arm,” except it really can’t do anything cool (like turn into a camera or a magnifying glass), although I suppose administering medication directly into a deep artery that runs into your heart is cool? I will be relieved to get this thing out!

Robo-arm.

PS. Thanks to everyone for the continued well wishes! It really keeps me going and makes me happy. I got a nice note recently from my pal, Anna Smith, who wrote,”…though you may feel like an acorn, you have the strength, grace, power and wisdom of the mighty oak inside you.” I really liked that, and then I saw this tree (below) on my walk today. It all kinda came together and I wanted to share it. Be the oak.

So it turns out the burning and pain I had in my arm during the last chemo was not vein irritation/superficial phlebitis, but was a leakage of the chemotherapy medication into surrounding tissue in my arm. I am told this rarely happens (only 5-6% of patients experience this)… ARG! C’MON!

I gotta say I am over this.

Watch and wait is probably the most nerve wracking protocol ever. For the past 6 days, I have watched and documented a nasty rash develop on my forearm, hoping that it wouldn’t “ulcerate” (thank god it didn’t). The “extravasation” (leakage of intravenous drugs from the vein into the surrounding tissue) injuries from chemotherapy can be very serious. Today it finally looks like its starting to get a little better. I went in to see Dr. Isaacs and she feels pretty confident it will heal up on it’s own. It is possible it could leave some “cording”, which shows itself as a palpable tight and painful band of tissue (like a cord – hence the name) running down the arm towards the hand (I am really hoping this isn’t the case).

Tomorrow is chemo day #3. Because of the IV injury in the last round, I will be getting a PICC line inserted tomorrow morning. This line will access a larger deeper vein, which will be a safer delivery method for the chemo. I will have to flush this line daily to keep it from getting infected and can’t take a bath with it. I’m saying a little prayer this goes smoothly, doesn’t hurt too bad, and that the next round of chemo is easier than the last.

I might need to send myself to some sort of spa when this is all over.

This past treatment left me feeling grateful (well anger and sadness came before the gratitude).

I feel angry when I think of my two beautiful aunts undergoing this wretched chemotherapy treatment. They were both so wonderful. Deb, with her infectious belly laugh and determination, and Anne with her caring advice and her grace and style. I miss them both a lot and I’m sad that I can’t talk to them right now. Out of this anger and sadness, I do feel gratitude. I am grateful for all the wonderful times I spent with Deb and Anne. I have wonderful memories and pieces of each of them that I hold with me. Really good things. I am also grateful that they are not in pain. I felt a presence early on in my diagnosis of light and energy that was really calming and protective. I like to think this was Deb and Anne awash in peace and happiness and letting me know that things are always OK just as they are. Love you and miss you Anne and Deb, I have been thinking about you both a lot lately.

I have a lot to be grateful for actually. I am so grateful for the nurses at Georgetown. Karra and Lilly are wonderful, responsive, supportive and just human. I am grateful to be able to spend time with family and friends and to connect in a deeper way with new friends I am making along the way. I am grateful for a loving husband and for the evolution of our bond. I am grateful for my ever-so attentive mom and my sensitive dad. I am grateful for my talented and hilarious brother. I am so thankful to have the capacity for deep friendships. I love my friends, they are my extended family members and I am lucky this circle keeps growing. I am also grateful for my sidekick Mr. T, who keeps me laughing and appreciating the little moments.

…and in a very new way, I am truly grateful when I feel well. Just to sit and feel good and have the sun shining on your face, it’s a gift. I want to make sure I remember this.

Wishing everyone health, peace, love and happiness.

Love, Al

I am writing this during a particularly bad time to make sure I capture the sentiment properly. Chemo sucks.

An old co-worker of mine had an expression that she would use to describe how she felt on a particularly bad sick day. She would say, “I feel like death warmed up.” I think that kinda sums up how I feel on about day 5 after chemo.  I’ve got to admit, I am feeling a little less GI Jane right now and a little more mini Darth Vader without his helmet. My look is getting a lot more cancery. Is cancery a word?

With two rounds of chemo down, I am now getting an idea of the way this goes. Day 2 after chemo, I am doing pretty well. I go in for a Nuelasta shot which is supposed to help boost my white blood cell count. Day 3 I feel OK, but I’m starting to feel a little tired. Day 4 I am feeling pretty run down and then days 5-8ish, I feel like a total piece of shit (more on that below).

This past treatment definitely felt more harsh than the first. I felt a little nauseous during the treatment and I also got vein irritation from the chemo meds. My arm swelled and burned and the nurse kept checking to see if I had “good blood supply” on the IV. She wanted to make sure the vein didn’t collapse and that none of the drugs escaped into tissues in my arm (blah, gross!) I teared up a few times during this treatment and Jim rubbed my hands. I was quick to catch myself, so that it wouldn’t turn into a complete sob fest (once I start, sometimes it’s hard to stop, and I’d rather do that kind of free form crying in the privacy of my own home). Besides the vein irritation, round 2 was pretty much like round 1, a full day of infusions at Georgetown.

Side effects experienced (granted these don’t happen all at once, but they come on in nice waves and layers):

• Fatigue
• Cloudiness
• Headache
• Congestion
• Sinus pressure/pain
• Ear aches
• Hair loss
• Constipation
• Diarrhea
• Muscle Aches
• Acne
• Anxiety
• Rash
• Nausea
• Loss of taste
• Mouth sores
• Folliculitis

So that last one on this list is a real bummer. I have a wicked rash all over my head right now that is really painful and uncomfortable. I would post a picture, but I don’t want to scare the children. I contacted the nurse this evening and she said it looks like something called folliculitis. The biggest problem with chemo is the possibility of infections, so I am starting an antibiotic to prevent a big old problem on my bald head. Let the good times roll.

Bye bye buzz cut, I’ll see you later. Round 2 with the clippers last night left me channeling Sinead O’Conner. The look is more severe than the buzz cut. Jim surprised me by cutting a nice mohawk first (I probably won’t have that haircut again, but it was interesting for 5 minutes). Oh and I learned two things last night; the dog has no idea what I look like, nor does he care, and without hair your head gets really cold. PS. I feel like the Dalai Lama.

I never thought I would ask Jim to buzz all my hair off, but last night I decided that I’d take the bull by the horns and cut it, rather than let it fall out in clumps. I shed a few tears as Jim ran the clippers over the back of my head, I felt like an unwilling soldier, but I actually felt relieved when we were done.

What is interesting, is that it isn’t as weird as I thought it would be. It actually feels really clean and nice. Also, I had more hair than I thought I did! I guess it’s fine, but there is a lot of it. I had already lost a lot, so it should be thicker than this when it grows back. Not sure how I’ll feel when I am completely bald, but I am OK with the buzz cut. Soooooo, here I am (complete with camo T-shirt to complete the look)…

So the wig was becoming a real thorn in my side. The thought of losing all my hair really started stressing me out (and honestly still is), and my hair is starting to thin a bit, so I decided it was time to buy a wig. I already grabbed some cute hats and scarves, but I just wanted to have all the options at my finger tips. Wig shopping attempt number 1 was foiled by Hurricane Irene, wig shopping attempt number 2 was foiled by an unexpected Labor Day weekend closure, but the third time proved to be a charm, and I made it over to Amy’s of Denmark with Andrea yesterday to try on some options. Tina at the shop was very friendly and helpful and made me feel comfortable.

Here is the low-down. The human hair wigs are nicer, but they run about 1,600! Woa! They also require more care and really need to be professionally washed and styled at least once a month. The synthetic wigs are not as soft, can’t be near high heat, and they won’t last as long, but they are much cheaper, lay flater, and are low maintenance. I must say, I did like the feel of the human hair better, but I couldn’t find a style that I thought looked good enough to spend that kinda of money. Pictures are below, the long wig is the human hair, looks pretty nice, but it would need to be cut and I am just not sure what it would end up looking like after the hair cut. I thought that long wig had the possibility of becoming a very expensive bad haircut. The shorter wig is synthetic and is good to go right off the shelf. Jim went with me today and confirmed that the synthetic wig looked pretty much like my real hair…so I bought it. It was $350 which is fully covered by my insurance. Not sure what I’ll really end up wearing, but at least the deed is done. Who knows, I could still freak out later and buy a human hair wig, but I feel settled about it for today.

The Bles Infusion Room at Georgetown Hospital is brand new. There are nice warm wood floors and windows that let in some beams of light into the space. I show up early with Jim at 8:30am and check in at the front desk. I don’t have to change into a hospital gown like I did for surgery, and I don’t settle into a hospital bed. After about 30 minutes they whisk me back to Bay #9. The “Bay’s” are semi private seating areas that you can close off with a curtain for more privacy. There is a lazy boy type chair and a couple of chairs for guests/nurses to sit. I was glad I brought a nicely bleached blanket to cover the chair and my own small pillow and throw (This is one of the times in life that you are supposed to be a germaphobe, the nurses told me to!) There is a flat screen TV, which old people like to listen to at high volume in neighboring bays (I might add “head phones” to the suggestion box). All in all the space is new, clean and bright.

In addition to being assigned a “Bay,” you are assigned a nurse for the day. It started off a little rocky with my nurse Sue, when she came to get my IV inserted, and whoops, went “clear through the vein.” I looked over and saw a blood soaked towel under my arm. Wholly shit, I started feeling twinkly and dizzy and my arms went kind of numb. I turned away and reclined my chair back some more. Sue was quiet and she seemed like she was new and a little nervous herself. She wasn’t talking and when she was trying to get the bleeding to stop, she called out nervously for help from another nurse (this did not put me at ease). I wondered if she knew what she was doing. It turns out, as the day went on, Sue was great, she offered tons of info, albeit tons of scary info, but she was very competent and friendly. In fact, all the nurses worked together to make sure everything was taken care of. I did make the decision to go with Georgetown because of the quality of the nursing staff, and I do feel like I made the right decision.

Sue hooked me up with a plethora of anti-nausea IV’s and a Benadryl IV for about 30 minutes of pre-medication. Jim had a big client meeting and needed to leave after the pre-meds were administered. I came with a team of people (identifying myself as a first timer in the infusion room), so my parents were there with me and stayed with me through the rest of the treatment. I said goodbye to Jim and his eyes looked sad to me.

Sue double checked my name and birthday against the first chemotherapy drug called Taxotere (good idea, you definitely don’t want to get the wrong chemo by accident). Sue handed me some information on the drugs I would be receiving. The Taxotere ingredients actually look rather benign. It almost sounds like chemotherapy that Whole Foods might produce. Taxotere belongs to a class of chemotherapy drugs called plant alkaloids. The alkaloids are made from the periwinkle plant, the bark of the Pacific Yew tree (taxus),  the May apple plant and the Asian “Happy Tree.” Good times right? I am anxious as the liquid begins to drip into my veins. There is the risk that your body might reject the medication in a severe way, and you won’t know until you give it a try and see what happens. Drip, drip, drip…in it goes…2 and a half hours later the bag is drained into my system, I can’t really explain what it feels like, but it is weird. The good news is that I didn’t have a major allergic reaction. The second drug they hooked up is called Cyclophosphamide. This one sounds more sinister, as it is derived from mustard gas, but the risks of allergic reaction are lower than with the Taxotere. This one makes me congested, so they slow the drip.

My mom and I watch an episode of Project Runway to pass the time. My mind is kind of numb. I know my parents are in agony seeing me hooked up to the chemotherapy and I hate this. We send my dad to the Apple store for Skull Candy ear buds. I know it’s really nice out, so I am hoping he has a nice walk and gets some good fresh air. A guy walks around with bagged lunches for the patients and I force myself to eat a turkey sandwich. I am in and out of the bathroom a bunch of times and am really careful not to touch anything or let any of my IV wires touch anything. I glance around at the other bays when I get up and I notice a pregnant woman getting chemo! What the! Arg! My heart sinks. I also notice an elderly woman who is there with her husband, her face is so pained and sad. I tried to smile at her, but she looked vacant. I don’t know how the nurses stay so upbeat, it is really amazing.

More time passes, the Cyclophosphamide is finally drained. I tell Sue the bag is empty. Well, that’s it. 8 hours later I have put in a full day of work at the Infusion Room. We head home and I am prepped with the 24-hour emergency nurses station number. I must admit, I am kind of waiting for the other shoe to drop.

Well it’s finally here. Chemo Day 1 is tomorrow. I have been dreading this day since I learned that I would need chemotherapy, but now that it’s upon me, I feel ready. I went last week for a “Vein Assessment” and the nurses do not think I need to have a mediport installed for the chemo delivery. I am hoping that my right arm is up for the task as my left arm can’t share the burden due to the lymph node removal on that side.

Yesterday was supposed to be wig shopping day, but it turned into Hurricane Irene day (More on Facebook on this subject if you are interested). Luckily I had already stocked up on the prescriptions/supplies I needed for tomorrow. I knew what to buy thanks to loads of great tips and tricks from some women who have been through this. This also inspired a serious clean out/reorg of our bathroom closet and large purchases at CVS and Smile Herb Shop (picture below).

I thought it might be nice to compile tips and tricks that I received from the women who plowed through this before me:

Tips

– Let the RN know Immediately if you feel sick, dizzy, etc… They may need to adjust the flow of the infusion.
– Take Claritin (not Claritin D) for any pain you may get from your Nuelasta shot (or whatever they give you the day after chemo to boost your white cells).
– Stay well hydrated – Three days prior to chemo start drinking at least 3 quarts of water a day – continue to hydrate throughout (especially for the two days post chemo). These are potent toxins being pushed into your body and you don’t want them sitting for too long in your kidneys and bladder.  They can cause bad UTI’s.
– Do take your anti-nausea meds exactly as prescribed (do not wait to see if you are going to get nausea).
– As you are detoxing from chemo, wipe well with a wet wipe because the toxins can irritate your skin in that area.  Aquaphor or Vaseline can help protect it also.
– Use loads of moisturizer.  it sucks your skin dry.  Be careful going out in the sun- you will burn easier.
– The mouth is particularly effected by chemo. Mouth sores and thrush can happen quickly.  Some remedies include mixing a gargle rinse with 1 table spoon baking soda, 1 table spoon salt and warm water.  Mix well and gargle/rinse often. If they get bad, you may need a prescription for something stronger.
– Try to go to a “Look Good…Feel Better” program. They are offered at most hospitals & cancer centers. You do not have to go where you are treated. You get a nice makeover, free cosmetics and meet other women. Have an eyebrow pencil on hand as eyebrows and eyelashes will be lost in addition to the hair on your head.

Remedies

Acid reflux – Take Pepcid with chemo & then for 2 weeks
Dry eyes – Refresh eye drops
Dry Mouth- Biotene mouth wash, chew ice during treatment
Fever- Digital thermometer
Mouth sores – equal parts benadryl and Maalox (swish & spit)
Constipation/diarrhea or both – Have Colase and Immodium on hand
Fingernails – Tea Tree oil 2x per day before chemo & throughout treatment
Yeast infection – Acidophilus capsules 3x per week
Immune System- New Chapter Multi and Medicinal Mushrooms
Bone Pain- Claritin
Bone Density- Bone Strength from Whole Foods
Cancer prevention- Green tea

Anything to add to the list? Thanks everyone!

Additional advice:

Wig shops in Maryland- (Check your insurance company, some carriers will cover the cost or partial cost of a wig. My BlueCross coverage will cover 90% of one wig up to 350$. Your doctor may need to write you out a script for a “head prosthetic”)

Amy’s of Denmark, http://www.amyofdenmark.com/

Cancer Center at Howard County General Hospital, http://www.hcgh.org/content/cmcrc/default.htm

On Sunday, August 14, 2011, Dr. O’Brien at Shady Grove fertility retrieved 30 eggs from my ovaries! Of those 30, 21 were mature. Of those 21, 16 were successfully fertilized and cryo-preserved on Monday, August 15, 2011. So technically speaking, Jim and I conceived 16 children this past Monday!

This is certainly the most amazing science experiment I have ever participated in, and definitely the most stressful. I even faced and conquered a fear of needles (zero passing out episodes and I was even administering some of my own shots).

I think bullet points will help me explain this one better:

• On July 7, I met with Dr. Widra at Shady Grove Fertility in DC. (Note: Loved him and loved Shady Grove).
• I took 10 days of Progestin and was supposed to get my period as early as day 5, or as late as day 15.
• 15 days later, no period. (BTW, my hormones were going crazy. I got in touch with a new emotion, anger, it’s not usually my go-to emotion, but man I was pissed off starting around day 10 and it kept building from there.)
• I go in for an ultrasound to see what’s going on and find out I have a large ovarian cyst. (Good times, I like to keep things interesting).
• Dr. Widra said he would normally put me on the pill to cycle out the cyst, but I can’t go on the pill because the estrogen is not safe for me to take with the breast cancer.
• Dr. Widra suggests we wait a few more days to see what happens.
• I consult with two of my friends who are herbalists and they make me a special tea. A day later I get my period. Coincidence? We will never know for sure, but I think the tea worked. If anyone wants a special herbal formula to induce a period, let me know.
• Dr. Widra wants to surgically remove the cyst immediately so I can get started with the IVF cycle. The timing is now perfect to get started and I really have one shot at this because chemo can’t start later than the end of August.
• On July 31, I have a minor surgical procedure to remove the cyst. (This goes well. The twilight sleep was actually quite refreshing. Thanks Ma, for picking me up at 5:30am for this one!)
• That same night I started the egg harvesting protocol.
• For 13 days I injected myself in the stomach with follicle stimulating hormones (Yes, I can give myself shots! Who knew I was such a bad ass!)
• For 13 days I went in for regular ultrasounds and blood work to carefully monitor the progress and watched daily as more and more follicles kept coming.
• “Wow! You are working on quite a batch” one nurse exclaimed. “This is a really good looking cycle.” I couldn’t help but feel proud, I know it’s ridiculous to be proud of something that is completely out of my control, but hey.
• On Day 13, Dr. Widra took a look and became concerned that I might present with Ovarian Hyper-stimulation Syndrome (“OHS”). Oh great! Just what I need! He adjusted my final “trigger shot” medication try to help avoid this.
• That night, I unpacked the “trigger shot” and to our surprise, the shot was GIGANTIC. “Um, is this for real” Jim asked. He was kind of laughing a little bit at how ridiculous it looked. This one had to be stabbed into the upper buttock. We watched a “how to” video , and it was literally a very aggressive stab into the muscle. I held onto my desk and Jim jabbed the shot in (I had 100% faith in Jim, he is a real technician, and of course the shot was administered perfectly). OK, here we go…
• The next morning, I went in for blood work to see if the shot worked. I felt fine.
• Later that afternoon, when I was walking the dog, I started to feel dizzy, nauseous and crampy. Hmmm, something is stirring.
• Shady Grove gave me a call, the blood work looked perfect, I was all set for egg retrieval the next morning.
• That night, I felt like I had an alien in my stomach that wanted to break free.
• Sunday, August 14, Jim and I went in at 6am (Jim never went to sleep), and I was prepped for the procedure.
• Waking up, I remember they said they were still counting eggs in the back and would let us know when they were done. It was taking a while. I started asking all kinds of crazy questions, like “Did I do better than a bakers dozen?” “Did I set a clinic record?” Oh boy, the sandman would have whisked me off the stage in under 30 seconds. Jim was shaking his head.
• Dr. O’Brien came out to let us know that they had retrieved 30 eggs! A veritable army of Quindlen’s!
• Two days later my stomach looks like I am 3-4 months pregnant. I am monitoring for signs of progressing OHS and will have to go in for another procedure if any fluid builds up in my belly. The nurse thinks with protein, electrolytes and rest, I should be back to normal soon, fingers crossed.
• Um, yea, that was kind of a big deal.