Author Archives: tlaquepaque0

Rebirthday

I usually avoid sentimentality but I am compelled to reflect today on the previous year. I have hit a huge milestone. 2 years bone marrow transplant anniversary is January 15. I checked into the hospital January 8, 2013 to have what was left of my own blood cells decimated and replaced with cells from a stranger. I was told of all the risks and complications of this intense and highly complex process. Death or permanent disability from GVHD and infections were the concerns. But I was sick enough and at risk for relapse that the transplant was necessary as a life saving and extending procedure. And just as a summary I had 3 full days of twice daily total body radiation where I was a passive participant as my body was moved from the hospital bed to a wheel chair and I was taken to some dark hole of the hospital where a physicist and radiologist along with multiple technicians propped me into place while a mild nuclear reaction was directed towards me for two hours. The next two days was almost continuous high dose chemotherapy liquids dripped into my central line. Due to the fatigue from the radiation I do not remember much other than the feeling of being absolutely wasted and mostly unresponsive. Day 6 was a day of rest while they waited for my neutrophils to drop and for my body to hit its nadir. Day 7 in an anticlimactic middle of the night transfusion I got new cells gifted to me from a 28 year old male and flown all the way from Germany.

As I approach this 2 year rebirth day I have been feeling very well. I have had more than my share of colds and I have the joint aches and pains that have become and will always be a part of me but I am working and taking my kids to activities and I exercise at least 4 days a week and I’m meeting goals that I never thought would be possible for me. I’ve increased the intensity of my workouts and I’m challenging my body with diet to be the best it can be. I might be somewhat overcompensating but my body betrayed me and now I am attempting to dominate. My time of being a disengaged and almost impassive patient is behind me.

We all got some kind of bad cold a couple months ago. Amira and I both tested negative for influenza via nasopharyngeal (aka brain) swab but it was a flu like cold in both intensity and duration. Everyone else is fine but I ended up back at the hospital with secondary infections including bronchitis and conjunctivitis. Since I have had life threatening C diff. Infections antibiotics are not given to me unless necessary. The new nurse practitioner got me started on eye drops, codeine cough medicine and enough antibiotics to cure the plague. Being the new NP she did not know that this particular antibiotics tears up my digestive system. And I forgot since it has been awhile. My tendency to forget ever being sick when I am well is mostly a good thing except in these cases.

So I spent 2 days feeling nauseous and puking before I remembered that I should prob not take that drug and I called for a different Rx. But I am thankful for those 2 days of being not well for a couple reasons. The constant, unrelenting feeling of nausea was a familiar feeling. I remember how I had nearly constant nausea for most of my treatment so for probably a year and a half? Of straight nausea. That could really mess with a person. I also became more confident in my body’s ability to heal. To be sick and then get better without the fear of all the horrid things that can happen to a body with compromised immunity. This time I was just sick enough to appreciate my wellness. And it was a reminder of how your life can change in just a moment. A couple words said to me by Dr. Lilly. Breast cancer. Leukemia. I had no idea at the time of the weight that these words held. I remember telling Jeffrey as we lay in bed in the dark that the doctor said its Leukemia but we don’t know and he could be wrong. I literally shrugged it off knowing that I would be fine. But we were both right. It was leukemia but I am doing fine.

Here is me being beastmode at the gym.

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Two year post transplant

Today is the 2 year anniversary of the day I checked into the hospital for my bone marrow transplant. Two years post transplant is a significant milestone. At 2 years you are considered to be “out of the woods” to quote my doctor. They do not dare to use the word cure until 5 years but generally if something bad is going to happen it will happen in the first two years after transplant. I seem to be a “bad weather” blogger. I only post when something bad is happening. But I have been feeling really great the last few months and I wanted to share that with all my followers who have supported me over the years.

Since I am at 2 years now I am doing some house cleaning. I’m finally admitting to myself that I am a medical supplies hoarder. Do I need 5 bottles of Biotine and 4 bottles of chlorhexine gluconate aka hospital body wash? No, no I don’t. I have piles of Tegaderm, over 70 saline syringes and a minimum 300 sterile alcohol prep pads for my central line that has been out of my body for a year and a half. And the masks, so many masks. But, I will start by getting rid of the pills I no longer need.

The pills show my trajectory through treatment. I have midodrine and metropolol for tachycardia and orthostatic hypotension caused by Vancomycin. Methotrexate chemo pill. Creon for pancreatitis caused by the daunorubicin. Prednisone for all the things. Budesonide for when I told the hospital that I would not consent to taking even one more prednisone. Citalopram for panic attacks that started after my central line leaked chemo onto my chest causing nurses and doctors to get that rare deer in the headlights look. Compazine, zofran and Marinol for nausea. Sumatriptan for the 2 week headache I got from a spinal fluid leak following a dose of intrathecal chemo when the polite doctor told me that not one of the 80 anesthesiologists at the hospital would touch me. Vancomycin for c diff. A variety of antibiotics: moxiflaxocin, augmentin, fluconozole, metronidizole and valcycolvir. Tacrolimus for suppressing my immune system while the transplant took. Pepcid, nexium and furosemide to try to control the side effects of side effects. Tramodol and ambien for sleep and enough OxyContin to kill a horse. I am ready to give all these meds back to the pharmacy for proper disposal.

I also finally have a plan for the full tote box of scarves, hats and wigs in my basement. I have been going to a young survivors support group through Jamescare For Life and one of the girls told me about a organization called Hope Scarves. They take donations of scarves from cancer patients that have finished treatment and they have them cleaned then send them to patients just starting treatment along with the story provided from the donor. My wigs will be shipped to Wig Exchange. They accept high quality gently used wigs to pass on to someone who needs. I am able to include my story with these as well. We share our age, date and type of diagnosis and answer 3 questions.
What gave you hope? What was the hardest part? And Words of encouragement to share?
I hope I can be an encouragement to the women who get my scarves. I no longer need them.

Look at all that hair!

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Never underestimate the importance of a good eyebrow.

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Pink silk scarf

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The whole bundle

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Shingles

Let’s take a moment to discuss Shingles. First off, the name. Why is it called Shingles? I’m sure it has some Latin root that I could easily google but I prefer to think of it as originating because of the rash’s resemblance to what it would look like if you got a full rub down by roofing shingles over half of your body. How it feels might also be similar to being hit repeatedly in one spot with a bag of new roofing shingles before a piece is used sandpaper-like to rough up the skin in that same spot. Because the pain isn’t just surface. The virus lives in the nerve roots so you feel it deeply.

I’m sure everyone is concerned about the hip replacement. Well, the hip is FINE! Range of motion is improving. I have mostly graduated from the walker to a cane. Although I love the walker so much I still use it to make things easier. My PT comes to the house 3 days a week and I have started doing stairs. He thinks I’ll be comfortably walking unassisted next week.

But the Shingles. OMG, we have reached the “fucking kill myself” level. I realize that I got a significant portion of my bone structure hacked out and replaced with metal and plastic but really, that was NBD compared to the Shingles. My thoughts were echoed by my friend who has had several open heart surgeries and has had shingles. She gets it too. I am searching on Craigslist for some spiritual cleanser to come burn sage or a Shamen to help appease the spirits that apparently are here to spite me.

This week I met with the orthopedic surgeon and everything looks great. I’m healing well. I also saw the Infectious Disease doctor. This appointment was more complicated. I’m on high doses of Valtrex for the Shingles. Yes, that’s the drug that also treats genital herpes. Fact: Shingles’ medical term is herpes zoster so it is related somehow to herpes simplex. I’ve been taking 6 times higher dose for the shingles than is typically prescribed for herpes. I’ve taken this drug before at the prophylactic dose and it upsets my stomach. At this high dose I have nausea and lack of appetite. I’ve been having a difficult time getting enough calories and nutrients each day. This makes me feel even more tired.

I’ve been told that typical pain medications do not work on the nerve pain so I’m off all narcotics and I’m just taking meds that I’ve been prescribed for neuropathy. I also use lidocaine cream on the rash followed by capsaicin cream as recommended by the doc. The capsaicin cream is made from hot peppers so it burns your skin and nerve endings to relieve the pain. The lidocaine cream is because the capsaicin burns your skin. The object here is to avoid long term nerve damage that can occur if shingles in some older people if it’s not treated properly. My doc said that I’m essentially an old person so she’s not sure how my body will react.

So, here I sit with an ice pack on my back. I haven’t worn a bra in 2 weeks. Not that I need a bra for anything other than a formality but I just can’t have anything other than a soft loose tshirt against my skin. We did make it out to see fireworks last night. I have gotten used to the looks I get for walking around with my granny walker. Jeffery likes to point out all the people over age 80 who have the same walker as me. I say good for them for doing what they need to do to stay active. The elderly are now my peeps.

Pelotonia sunglasses from the James.

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X-Ray

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I got a copy of the X-ray completed immediately following installation of the new hip. The heart is just to preserve modesty.

Look at the giant screw in my hip bone! But according to the doctor I only needed the one screw. My bones are in bad shape so he thought he might need to use two anchoring screws.

Although I am on isolation and confined to my little room I have been able to get around okay. I have done laps around my bad with my walker.

Tomorrow I am going home unless I get fevers tonight. Cross your fingers.

Day 3

I am day 3 post hip replacement surgery. The hospital stay is 3-4 days typically. I’m hoping to go home tomorrow but I hit a complication that is unrelated to my hip AVN. I started having back pain before even checking in. I felt like I had a sunburn with also come,kind of deep pain radiating from my back to my chest. It has been diagnosed as Shingles. It is possible that it was brought on by the stress on my body.

I’m reclining in the hospital bed watching the Will and Grace marathon on the We channel. I have an ice pack propped between my night gown and skin on my upper back to try to take the edge off the burning pain of the Shingles.

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I’m having as much pain on my back as in my hips. My left hip is swollen and hard to the touch. I have restrictions in my movements. I can’t cross my legs or bend at the waist. I am being positioned by a large foam wedge between my legs that has Velcro straps that go around my legs to hold them. There is a trapeze bar above my head that is supposed to help me lift myself but I really just hit my head on it.

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I’m waiting for a copy of the X-ray that my ortho took right after surgery. I still have a hard time picturing this foreign body inside my leg. He just cut off a piece if my bone structure and put in metal and plastic.

I have been able to get up and walk around the room using my walker. I’ve moved from the bed to the chair and the bathroom. Ortho wants me to try to be more active but I’m on isolation because of the shingles so walking the halls is not possible. The plan is to be able to go home tomorrow but it depends on if my low-grade fever continues and if I can get off the IV pain meds.

There is a bit of sun peeking ing the windows and onto the flowers that some wonderful family members sent.

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Hip Replacement

In just 36 hours I’ll be checking into Hotel James for a long weekend stay. I’m scheduled to have a new hip installed. I have little trepidation now that the decision to have the surgery has been made and I am relatively prepared.

A couple months ago the pain in my hip returned. It was mild at first with just a little tightness. As it progressed I felt weak and pain became sharp in the evening especially after I sat for a bit and needed to stand back up. To get up and stabilize myself on my hip joints became a struggle. I had to position accurately and wait for my body to settle into the correct position before I could walk. The doctor sent me for a MRI and a follow up appointment with the orthopedic surgeon. The image showed AVN throughout 80-90% of my hip joints, inflammation of the bone and the beginnings of breakdown of the femoral head. The doctor described it as like a Ping pong ball. If the ball gets a small dent in it with continued pressure it will begin to collapse. He said that hip replacement surgery is necessary to correct it but the need would be based on my pain level. I asked about core decompression or injections. He said that if I was completely against replacement he would try it but there would be only a 10-25% chance that it would help and only be temporary. He said that those procedures are usually more applicable for people who are not quite as sick as me and who have a stronger bone structure. So, I left there with the idea that I’ll probably have to do it but I thought I might start to spontaneously feel better since my hip pain improved since my diagnosis in August. It didn’t work that way.

The pain increased to all the time. I am currently walking like a cripple and need a cane or crutch frequently but the decision was made for sure when I could no longer reach my toes to paint them. My new hip will be the next step in becoming the Bionic Woman.

In preparation I have acquired a new assistive device. I can’t wait to try out my new walker!

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It is red (sexy!) has hand brakes (cause it’s so fast) and a basket to hold my latte while I’m cruising. But the best feature is the padded seat and backrest. I have experience with trying to get around on crutches or a plain walker and it is challenging to get from room to room while holding something and a seat will give me opportunity to be more active sooner. Sometimes I’ve wanted to go places with the family but I miss out when unsure of the availability of a place to sit to rest if needed. I can maybe walk around the Farmer’s Market, put some tomatoes in my basket and have a rest on my seat before going home.

Diagram of a hip replacement. I don’t know for sure what type I will get but they all look similar to this with variations on the amount of metal, plastic and ceramic.

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I’ve been told that the hospital PT comes in the next day to get you up and walking. I will be in the hospital for 4 days. Outpatient PT starts a week and a half after surgery. The rest of my time will be spent watching the 2nd season of Orange is the New Black on Netflix that I have saved just for this occasion. The best part about watching a show while on meds is that I’ll be able to watch it again for the first time once I’m sober.

“Cause it’s hard to dance with the devil on your back”

Pelotonia 2014

Petolonia 14 is in 60 days. Date is August 8-10, 2014. For the second year I am participating in a program by The James called I Ride For You. A student preparing to ride is matched with a patient from the James. This initiative is designed to create a special bond between Team Buckeye Student Riders and the patients and survivors served by The James – Ohio State University Comprehensive Cancer Center.

This year I am paired with a recent graduate of the School of Veterinary Medicine. Sarah has shared with me that this is her 3rd year participating in Pelotonia and she will be riding 100 miles. Many people participate in charity runs but the Pelotonia is special. It is a minimum commitment for the 100 mile ride to raise $1800 to participate and 100% of money raised goes directly to cancer research at OSU James. I have and continue to benefit from these programs. Research is the way advancements in treatments are made. Not all large cancer fundraising events promise 100% to research. I’m thinking of the big pink one that focuses on awareness.

I am not physically able to ride a bike. Right now I even struggle to walk like a normal person. The fundraising requirement is a big commitment for a student. I can start to give back by asking for support for this event. If you are wanting to donate to Pelotonia this year please give through my student rider Sarah here

I remember the summer that I was first admitted to the James. Now it’s normal for me to go to the hospital because I still have to go an average of once a week to see various doctors. But then it was confusing and uncertain. Some of my doctors and nurses wore ties or pins announcing their participation. The commitment they showed for serving the patients (me) was comforting. I encourage you all to look at my links to the Pelotonia page. It is an inspiring event.

Since Sarah is now a Vet I will post a recent pic of me with my Beagle Molly.

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Let there be nipples

It has taken a few years but I’ve finally completed the last stage of breast reconstruction following my bilateral mastectomy for breast cancer. Last week I was able to get my nipple tattoos. As it turns out people love to talk about breast cancer and mastectomies and silicone but even the most interested turn squeamish when you mention nipples. Maybe it’s the word or the intimacy it implies or the difficulty in picturing what a breast exactly looks like without one. When a person has a mastectomy MOST of the time the nipple is removed as well. It’s the safest option. No worries though. The doctors are pretty fantastic at reconstructing a fairly convincing nipple using just skin and ink. I had my skin graft done two years ago and was scheduled for my tattooing but I got an inconvenient diagnosis of leukemia and had to put it off. ¬†Last week my insurance re-approved and I went back to my plastic surgeons office for the final step. The tattooing of the color for the nipple. This was part of the healing for me. I needed to finish one cancer. It has less do with the aesthetics and more to do with the symbolism.

This video does a great job of explaining the process. I did not road trip to see a nipple specialist since my PS office does a pretty good job with the coloring.

Be The Match Walk + Run Columbus 2014

We have opened our team Perfect Match in preparation for our 3rd year participating in the Be The Match Walk + Run in Columbus on August 16, 2014.

See our team page here.

Be sure to sign up under our team name Perfect Match using code Earlybird by May 9 for $5 off registration.

We will also be having a fundraiser at Wedgewood Pizza in Grove City on May 21. They are generously donating a percentage of sales that day when Be The Match fundraiser is mentioned. All donations will go directly to support of Be The Match Walk+Run. Participants raise critical funds to help patients with blood cancers, like leukemia and lymphoma, take the next step toward a life-saving marrow transplant.

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Spring break, fresh ink

It’s spring break. The weather is sunny but not warm. The winter that will not end continues but I think back to spring break two years ago. In a carpe diem attempt I flew to Arizona to meet my friends for a girls weekend in Sedona. Jeffrey and I also took a quick trip to Chicago for a weekend without kids. I knew I needed it but at the time I had no idea how much. I haven’t been well enough to travel since.

As I’m nearing the two year cancerversary for leukemia (3 years for breast cancer) I’m am starting to separate myself from the identity of being a sick person.

As part of my healing I got a tattoo. I had a consult for a bigger piece just a week before I was diagnosed. I was finally able to go in to have this smaller piece done. I have big plans for more but need to make sure my body can heal this one properly. It’s done in hot pink ink fading to white.

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“Perseverance is not a long race; it is many short races one after another.” ~Walter Elliott