My 2 Year HSCT Birthday

IMG_0123Happy Birthday to Me!

It’s been a while since my last update but today is a special day. I feel the need to update my status, especially for the new people following my story as they educate themselves on HSCT for MS. It’s encouraging to know that new people are following my blog even two years out from my transplant!

I’ve been feeling well. As I’ve said before, my 5 MS symptoms (fatigue, heat intolerance, numbness in my forehead, ankle/foot pains, and bladder issues) have subsided since my final days in Monterrey. I had a flare of the ankle pain at the 11 month mark post transplant which lasted for about a month. I know that this sort of flare up is fairly common in the post HSCT “roller coaster” period. Going into HSCT, that roller coaster that everyone talks about was constantly on my mind. But the month long ankle pain flare was my only real experience with it. At the time, we were worried but it went away and has stayed away for the last year. Now I only have issues with my feet and ankles when I have spent too much time refereeing soccer on the weekends, which I attribute that to being 45 and not in the best shape.

In the category of “not too bright an idea”, I did end up in the ER around the 7 month post-HSCT mark. I had a fever of 100.5 F and felt really bad. My discharge instructions from Monterrey said to head to the ER for fever due to concerns for sepsis. The ER took my history seriously, and put me on a “sepsis protocol” which called for certain labs to be drawn and IV fluids given. Now the funny part: the day before was my dad’s 75th birthday and we celebrated with a party featuring a margarita machine. We spent the day drinking margaritas and very little water. I didn’t realize it at the time, but I got pretty dehydrated which likely led to the hospital trip the next day. The ER gave me 3 liters of IV fluids and, since my sepsis labs were normal, I was sent home that night feeling much better. I would advise, even 7 months out, still pay attention to hydration! Live and learn.

While down in Monterrey, we discussed with Dr Elias the best use and timing of MRI post-HSCT. I had an MRI at 6 months post that we decided would be my new baseline. That MRI was unchanged from the one prior to my treatment. I’ve since had another MRI at the 18 month mark which is also unchanged. At this point with these positive results, my neurologist has told me he thinks that there is more than a 90% chance that my HSCT treatment worked. His only concern now is how long it will last. We’ve agreed that I will see him yearly now and sooner if I have new symptoms. This is much better then my quarterly visits prior to treatment.

In my opinion, I still have MS and it is in remission. MS will always be in the back of my mind. I will always question every ache, every time I’m extra tired– is this a normal thing with being human or is this my MS? For that reason, I’ve agreed with my neurologist to have a yearly brain and C spine MRI to verify my remission. We’ve agreed that if I have no progression of symptoms, then I will get those MRI’s without contrast which is better for my health.

I can’t remember if we’ve talked about vaccines, but its recommended to get revaccinated after HSCT. The “reboot” of my immune system also means that its likely that my immune system doesn’t remember immunizations and illnesses from my childhood. I started my re-vaccination plan with my primary care doctor at 4 months after HSCT. Live vaccines aren’t recommended until 2 yrs out from HSCT, so yesterday I received my first live vaccine (MMR). I’ve already finished my hepatitis B, tetanus, Hib, pneumococcal, and polio series. I had a flu vaccine last year, as well as this year. I’m planning on getting a shingles vaccine and I will need to get a second MMR booster next month. That should do it for re-vaccination.

All in all, I’m feeling fantastic. We are busy with Brynn starting Kindergarten and all the normal busy-ness of life. I’m reminded daily of why I embarked on this journey. I was my own best advocate and health detective. I’m grateful that I found the support online through the HSCT Facebook groups and that I could have this treatment early in my MS disease. I’d highly recommend HSCT at Clinica Ruiz/Mexico to anyone considering this treatment.

I think this is it for this blog. I’ll keep an eye on comments, but you should consider “no news is good news” and I’ll probably only update here if I have new MS symptoms develop. Thanks for all the comments and support.

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Day +181: Six months strong

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Out for our anniversary!

It has been quite a while since I posted (4 1/2 months or so), because there really hasn’t been much to say. I’ve been feeling great and living my life. I’m still avoiding certain activities, such as lawn work due to risk of infection from spores in the soil, and I practice good hand hygiene. (Bonus of HSCT: I’ve convinced Anji that we need a lawn service for this upcoming summer. No mowing in 100 degree heat. Chris for the win!).

This was a particularly rough flu season, and since my wife is a pediatrician, she had a lot of exposures to flu this year. During the peak of the season, she would shower and change clothes immediately when she got home from work to protect me from the flu. As we get through March, it looks like we dodged that bullet this year.

Day to day with our daughter, not much changed for me after HSCT. She went to preschool four days a week for 2 months to give me time to rest, but as of December we were back to just two days a week of school. We avoided crowded indoor places, but otherwise we had our normal daily routine. Luckily, Brynn hasn’t been sick all winter, so we didn’t have to implement our back-up plan for child care (her grandparents). Now that its spring, I’m coaching Brynn’s U5 soccer team and we are enjoying the warm Texas weather.

The most difficult part at this stage is maintaining my own awareness that I am still only 6 months out from HSCT. I’m not scared of things right now, I just try to be cognizant of making good choices. Since the new year, we are back to eating out, although I still avoid raw foods (salad, garnishes, sushi) and I’m selective of the restaurants, but we are living our life. We did save a lot of money when we weren’t eating out!

About a month ago, I had my third set of blood counts done by my hematologist. I didn’t have an appointment with the doctor, just lab work. The feedback I received was that the counts are improving as expected and I’ll see him for what is likely my last visit in May.

As we mentioned in past blog posts, our plan has been to get a new “baseline” brain MRI at about six months post treatment. The HSCT process didn’t filter out antibodies in my blood, so HSCT could be successful and some of my “MS antibodies” could still circulate for several months after treatment and cause damage. Also, my last MRI was 2 months prior to treatment while I was off my MS medication (Tecfidera), so it is possible that although I had no new symptoms, there was still damage done during that period. We discussed all this with Dr Elias at Monterrey and he suggested this 6 month MRI should be my baseline. If I develop new MS lesions from this baseline on future MRI’s, then we could conclude that the HSCT hasn’t been successful. The great news from this MRI is that I had no new lesions! Basically, my MRI’s haven’t changed at all since my initial diagnosis in November 2015.

More importantly than what my MRI’s show, my symptoms of MS have improved 100%. My main symptoms were facial tingling, bladder urgency sensations, ankle pain, heat intolerance and fatigue. I’ve occasionally had some mild fatigue, but I attribute that more to recovering from chemo than my MS. It just feels different. A different kind of fatigue. Otherwise, the other symptoms have completely resolved.

If I have any changes (good or bad) in the future then I’ll definitely update this blog. But as of right now, I feel very lucky to have had HSCT in the first place and for my recovery to have been so smooth.

Day +42: Hot Fuzz

I’m feeling very well. If it wasn’t for my bald head, I wouldn’t know that I had gone through a chemotherapy procedure. My hair is actually starting to come back in so my wife has nicknamed me “Hot Fuzz”.

We’ve been home for four weeks and I’ve had two follow up visits with my hematologist. My blood counts look good, my white blood cell (specifically lymphocyte) counts are lower than normal but still within an acceptable range and my anemia is improving. My hematologist is going to recheck my counts again in 3 months. Since everything is progressing as he had expected, he doesn’t need to see me in person for another six months unless I’m having a problem.

For the most part, I’ve settled back into my normal routine. Our daughter Brynn is still going to preschool 4 days a week, when prior to HSCT she only went 2 days a week, so I do have plenty of time to rest. Brynn has adjusted well to our return and is her normal, happy self. I’m still keeping up with hand hygiene and haven’t been eating out at restaurants. I’ve had to miss out on a few things–I couldn’t go to my brother and sister-in-law’s 25th anniversary bash and this year Anji took Brynn trick-or-treating. It’s hard sometimes to remember that I need to be careful, because I’m feeling so good.

I had a follow up appointment with my neurologist this past week, and that went well. He confirmed that I won’t be on a DMD, and he believes that there is a “90% chance” that HSCT will work for me. As supportive as he seemed to be prior to my HSCT, he still made a comment that he could have given me a drug that would have been just as effective. I couldn’t help but chuckle inside considering all the literature he gave me when diagnosed. None of the meds he offered had greater than a 50% chance of slowing progression down, let alone stopping my MS. However, he just couldn’t seem to help himself. In his mind, HSCT is an exceptionally risky procedure, but in my experience the most difficult part was fighting the boredom of isolation. This may sound flippant and I don’t mean to be. I really think that for an otherwise healthy patient who is recently diagnosed with MS, this isn’t a difficult procedure to go through. However, I’m realistic enough to know that only time will tell.

Thanks again for all the support in real life and online. We are still so grateful for the treatment I received in Monterrey. I’ll update here periodically but right now I’m very positive.

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Our first day home

 

Day +12: A beginning and an end.

Today we had our final consultation as a group with the doctors and staff. Dr Elias went over my discharge packet which includes a treatment summary (in English) and all of my lab work. He then outlined what we can expect over the next 6-12 months and their discharge recommendations which I’ll discuss below.

He stressed that HSCT is a treatment which has a beginning and an end. My treatment ended yesterday and while I may have some ups and downs, my overall health and functioning will improve steadily over the next year. My immune system is basically like that of a newborn and I should take some precautions but I can still be a part of the world. I can still do almost all of my normal activities. I’m beginning a new part of my life with MS put into remission.

For my family and friends, this is a summary of the doctor’s recommendations and what you should expect with me over the coming six months.

  • I can have close physical contact with my family and friends, however I should avoid contact with sick people. For instance, if our daughter is sick I can still take care of her, but will wear a mask. I’d ask that everyone be conscious of their own health and if we have plans together and you are sick, let me know so we can reschedule.
  • I can’t be revaccinated for any diseases for four months and can’t get the flu vaccine for a year, so I’ll rely on herd immunity. Even if you don’t normally get a flu vaccine, please get one this year for me. Please don’t be offended if I ask if you’ve had a flu shot. Go get it now, its not too early! Our daughter can tell you all about how to be brave–she got hers last month.
  • I have to be extra careful about what I eat for the next six months to avoid food poisoning. I will not eat at any restaurants for the first three months (insert super sad emoji here), and then after that I will be careful to eat only fully cooked food at reputable restaurants for three months after that.
  • My liver has had a lot of work to do during my chemotherapy so they’ve advised me to avoid alcohol for six months.
  • I will avoid large groups and busy places (theaters, grocery stores, etc) for the next six months.

After the doctor’s presentations, each patient put a pin in our hometown on the giant wall map. That pin represents our hometown but it also represents all the people supporting us back home. We had a chance to thank the staff and I hope I was able to impress upon them how grateful I am for the number of lives that they touch through their work. Not just me, the patient, and my wife, the caregiver, but its also our daughter, our family and our friends.

We are looking forward to flying home tomorrow and hugging our daughter tomorrow.

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Putting a flag on my hometown.

Day +11: Final infusion. I’m done!

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Right after Anji shaved my head shiny.

What a good day! I had my last treatment here, which was an infusion of rituximab. Rituximab is given at the end of HSCT treatment to destroy any “rogue” lymphocytes that might still be present in my blood. It is given in an infusion over several hours. I did have a small side effect reaction shortly after it started. I felt a dry, sore sensation in my throat like the first signs of a cold. It came on suddenly and the nurse stopped my infusion and consulted Dr Elias who ordered a steroid infusion.  The steroid infusion helped immediately. According to the doctor, this is a common reaction and once I received the steroids, I had no further issues. So, that’s it. I’m done with blood tests and IV’s.

Now that I’m done with HSCT, I truly can’t say enough about the doctors and staff here in Monterrey. The care that I have received has been wonderful. From the cleaning staff and drivers to the office staff and the doctors they have been first class.

I haven’t mentioned this before now, because I didn’t want my family and friends to worry, but last month the clinic experienced its first death of a MS patient getting HSCT (1 patient out of the hundreds already treated). The clinic, of course, over the last decades has had cancer patients who passed away, but this was a first in Mexico for MS patients getting HSCT. I found out about this death shortly before I was scheduled for treatment and naturally red flags went up. Fortunately, I was able to directly reach out for information and advice from a person who was in Monterrey last month. This person reassured me that the care here was excellent and the patient’s death wasn’t due to any problem on the medical care side nor was there any problem with cleanliness in the apartments. I later learned that the patient who died had unfortunately developed sepsis and then very rapid heart failure.

During our initial patient meeting on the first day, the doctors were very forthright in addressing this situation. This also was reassuring and they didn’t try to hide anything. I know that the death has really shaken the medical and administrative staff here. During the weeks of treatment they get to know their patients so well. There is an intimacy here because there is so much close contact between the staff and patients. They take their responsibilities very seriously.

Worldwide, the rate of death in HSCT for MS is less than 1%. That risk is real and should be respected, but all the medications that are offered for MS, including the Tecfidera that I’ve taken, carry a risk for allergic reaction or infection that can cause death. I understood this risk and felt like it was worth it. When I came here I expected to be in a cocoon for 28 days to help mitigate my risk of infection. For me, the worst part of the treatment was boredom. The time, expense and worry associated with this experience was well worth it for an 80% chance of stopping my MS. Now only time will tell if it works, but I’m happy to be where I am, regardless of the final outcome for me.

I’d like to again thank my family and friends for realizing that I had done my due diligence and supporting me in seeking medical treatment in another country. Trust me, I realize what it sounded like when I first told everyone. I’d like to again thank Mark McClaskey for informing me about HSCT in the first place. I’m so appreciative that Anji’s employers kindly arranged for her to be with me during treatment. We’ve had a lot of help with practical things on the home front. Our neighbors, the Bonzagni’s have been watching our house. My brother Greg and his wife Jenn have added our dog to their menagerie for a few months and my brother Scott has kept track of our bills and mail. And we are both so thankful to my in-laws, Kaye and Ken, for taking such good care of our daughter during the last 28 days.

Lastly, I’d like to thank my wife Anji. You’ve been my rock and my partner in boredom. There’s no one else I’d rather have by my side. In more ways than one, this would not have been possible without you and I realize that. You have my eternal gratitude and love. You made this easier and I know we’ve done the right thing. I love you.

PS Tomorrow we have our final consultation to go over post-treatment recommendations and what to expect over the next 6-12 months. I’m looking forward to this consultation and I’ll post tomorrow about their recommendations so my family and friends know what to expect too.

Day +10: Out of neutropenia!

Great news today! My blood counts are all on the rebound. I had blood drawn and a consult with Dr Elias and I am no longer neutropenic. In fact, my neutrophil count went from 130 to 9060 in two days! He explained that this is probably a little over-stimulation from my shots and those numbers can settle, but I am safe to resume pretty normal activities with more common sense precautions (hand hygiene, avoiding sick people, etc). My platelet count and red blood cell count have also started to go back to normal and my bone pain has subsided. I’m cleared to have my rituximab infusion tomorrow afternoon. Then the next day is our final consultation and we are done!

I’m excited to be out of the danger zone as far as neutropenia. You may be wondering, how will I know if HSCT has worked? I’ve said before, that I am very early in the course of my MS and I had very few consistent MS symptoms prior to treatment–mainly heat intolerance, fatigue, occasional tingling/numbness sensations in my face and ankles, and urinary urgency. The point of HSCT is to stop progression of MS, but some people do see improvement in their symptoms. Its hard to comment on any immediate changes or improvements. I don’t know about heat intolerance, as I haven’t really been outside in the last month, but I haven’t had any facial or ankle tingling since I’ve been here. I have noticed improvement in bladder urgency sensations in the mornings– my urine output is the same but I don’t have an over-fullness sensation that I’ve noticed for the last year or so.

We’ve been told that we can expect to see waxing and waning of symptoms during the recovery period of the first year. Also, the chemo and HSCT doesn’t eliminate the immunoglobulins already in my system. These are the proteins that have been made by my immune system and might still carry out the “message” to attack my nervous system. These old immunoglobulins can stick around for another few months in my body and could in theory trigger additional MS symptoms. I’m hoping those little devils keep to themselves, but we will see. I’ll plan on having a MRI in six months and have been advised by Dr Elias to consider that my baseline. If I have new symptoms or changes on the MRI after that, then I may be a “non-responder”. Time will tell.

Overall I’m feeling well and excited to be home in three days. As you can imagine, we can’t wait to see our daughter. FaceTime is great but it doesn’t replace the real thing!

Day +8: Smelling the oats.

My blood counts are still dropping, which is within normal for HSCT, but I’m the only one of five patients here who hasn’t started to rebound. We saw Dr Elias today and he expects my system to recover more over the next few days and I should get the last part of my treatment (the rituximab infusion) as scheduled in 3 days and go home next weekend just like everyone else.

Tomorrow is the last of a week of daily shots of filgrastim which I’ve been given to boost my blood counts (as have the other patients). This is the same medication I received prior to the stem cell collection, but then I had twice daily shots. Today, I’ve started to get more back pain similar to what I had just prior to my stem cell collection and I think this tells me that my bone marrow is working. Dr Elias told us today that once the neutrophil count starts to rise it usually rebounds pretty quickly. I’ll have another test in two days and they plan to give us all our rituximab the next day. I’ll talk more about rituximab then.

Other than some back pain, I’m physically doing well. We are being very conscious of hand hygiene and making sure all my food is well cooked. The last few days my hair has thinned considerably and last night Anji used clippers to get it as short as possible. I plan to shave it prior to going home to get rid of the stubble, but I’m going to wait until I’m out of neutropenia and my platelet counts improve. I don’t want to get a knick that causes an infection or bleeds too much.

We are in the home stretch. My mother grew up on a farm and she would use the phrase “smelling the oats” to mean that we are getting close. A horse might pick up speed closer to the barn because he can “smell the oats”. That’s us. We are anxious for time to pass so we can get home.

Day +5: Sitting around looking pretty

Today I had a blood draw and a consultation with Dr Elias. My blood counts have continued to drop as expected. My neutrophil count is down to 310 (from 530 two days ago) so I am well into the “severe neutropenia” level. My red cell count has gone down as well which is likely why I’m a little out of breath with minimal exertion–like taking a shower. All in all, I think things are going as expected. I’m being very diligent about washing my hands frequently and I try not to touch my face and mouth.

I’m watching the President’s Cup on ESPN today and my hair continues to fall out little by little. I haven’t needed to nap much the last two days but I am sleeping well at night. If all goes as planned, we will head home a week from tomorrow.

Day +3: Neutropenia begins

Hi everyone, this is Chris’s wife, Anji. I’ll be doing the blog today. Chris is doing well but he’s really tired and this is a kind of science-heavy post so we thought I should handle it.

Today Chris had his first blood test post chemo and we met with Dr Elias to go over the results. The labs show that the chemo is working and his blood cell counts have dropped as expected. They are particularly following his neutrophil count and watching for neutropenia. His neutrophil count today was 530 which is neutropenic and approaching the level of severe neutropenia (counts under 500). His counts have dropped pretty rapidly, and Dr Elias expects that they likely will be near zero over the next few days. This means that we must be extra cautious about any exposure to germs and we will both be staying in the apartment except for doctor’s visits for about the next week.

The following is a somewhat long-winded explanation of hematology basics so feel free to skip along if you don’t need or want the details (I won’t be offended!). Our blood is made up of three types of cells: red blood cells (responsible for carrying oxygen in our bodies), platelets (responsible for clotting our blood) and white blood cells (responsible for protecting our bodies from infection). The white blood cells are actually many different types of cells that perform lots of different jobs in the defense of our bodies. For simplicity, lets talk about two types of white blood cells–neutrophils and lymphocytes.

Neutrophils specifically protect us from bacterial infections and a low neutrophil count is called neutropenia. Lymphocytes protect us from viruses and also serve as the body’s memory of past infections or vaccinations. In autoimmune diseases like MS, those memory cells trigger the body to attack its own cells. Chris has received chemotherapy with the goal of eliminating the memory cells in his blood that trigger his immune system to attack his nerve cells. Basically we want his immune system to “forget” his MS. Unfortunately, there is currently no way to eliminate only those memory cells without also affecting the rest of his blood cells. So now we must deal with the potentially dangerous side effects of low white blood cells, red blood cells and platelets in order to rid his body of its MS memory.

The good news for Chris is that he has received a transplant of his own stem cells (HSCT). Those stem cells are in his body now figuring out what type of cell they are going to be. It’s like choosing a major in college and his stem cells may take a few days to decide between red cell, white cell or platelet. Once they declare themselves, his blood counts will start to bounce back.

All this activity in his body takes its toll and Chris is definitely feeling fatigue. As I write this, he just woke up from a two hour nap. Again, it’s good news that his counts are low because that means the process is working. Oh, and I’m also hoping that the stem cells will help with the tremendous amount of gas this dude is emitting. He keeps blaming it on the “barking spiders” in our apartment. LOL. Do I know how to pick ’em, or what?

Day +2: Packing suggestions for future patients in Monterrey

I’m feeling fine today and slept really well last night. Today’s post is at the request of a future patient and his caregiver to talk about specific things we brought with us and I’ll also talk about what we could have left behind. The Mexico HSCT Facebook page has lots of lists but they tend to be about treatment at Puebla (since more patients have gone there over a longer period of time) and there are some subtle differences between there and Monterrey. We were asked for a top ten list but this is a little longer and in no particular order.

Things we brought that have been really useful in Monterrey:

  1. A small notebook that Anji used to make packing and to-do lists prior to our trip.

    Since we’ve been here its come in handy for writing down questions for the doctors, making lists for the grocery store, writing this list for the blog, and on the front page we wrote dollars to pesos conversion amounts which helped as we got used to the currency.

  2. Netflix Login/password. All the TV’s are smart so you can use Netflix easily. If you don’t have Netflix account then consider a one month trial prior to arrival. We brought our Amazon Firestick and have used that for music but can’t access our Amazon Prime shows here in Mexico.
  3. Xbox or similar for entertainment. If you enjoy gaming this can help pass a lot of time. Also, Anji has liked having her iPad for reading and Facebook etc. We’ve used our laptop for the blog, FaceTime with our daughter, and online banking. The apartment and the clinic and hospital have WiFi so we’ve been able to easily call home on our cell phones.
  4. Spices for cooking.
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    Spices from home

    The supermarket (called HEB) is very close and you can find most everything you might need. However, Anji had more difficulty navigating the spice section due to the language barrier and a different cooking palate. We were glad to have our staples with us from home. Anji put each spice in a snack size Ziplock baggie and she just opens the end and sprinkles it out. We brought garlic powder, garlic salt, paprika, steak seasoning and crushed red pepper from home. Here we bought thyme (tomillo en polvo) and cinnamon (canela). If we had to do this over, we would have brought some premeasured baggies with all the spices for an herb chicken recipe we like to make. If you aren’t much of a cook then you might want to plan ahead and take some recipes. We’ve used the Crock Pot a ton and if your apartment doesn’t have one just ask the lodging supervisor Irving for one.

  5. Kitchen towels and washcloths. Dishes must be hand washed and we are glad we brought kitchen towels (tea towels to the Brits) with us as we couldn’t find them at the supermarket. Anji used the towels to pack and fill empty spaces in our luggage but she’s glad to have had them here. Also, if you use wash cloths you will want to bring your own (there are plenty of bath towels though).
  6. Special food. If there is some sort of special comfort food or drink that is specific to your home country then bring it.

    We are from Texas and this grocery store has had pretty much everything we normally see there. However, we did bring my favorite brand of tea to make iced tea. There is a plentiful selection of hot teas in the store but as we expected, none for iced tea. One of the other caregivers really wanted crunchy peanut butter which we never found (although there was plenty of creamy PB). Also, Anji is on a low carb diet, so we brought a lot of meal supplements for her (protein bars, shakes etc).

  7. My pillow. I really like my pillow from home, so it was one of my carry ons and I’m glad I brought it. Anji didn’t bring hers and has been satisfied the bedding in our apartment but I didn’t want to take the chance.
  8. Comfortable clothes. I can’t stress this enough, but bring clothes that are comfortable and easy to take on/off. We have a washer and dryer in the apartment so its easy get by on a small amount of clothing.
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    Button down shirt from the mall.

    I’m especially glad I brought several pairs of basketball shorts because those were easy to maneuver one handed with an IV in my hand during chemo. I wish we had brought a button down shirt or two, because I needed that when I had my PICC line. Anji was able to buy two at the mall down the street but it would have been easier to have brought one from home.  Although, if I’d brought one from home it wouldn’t have been nearly as vibrant as the one Anji found here. (Note: you will need a full button shirt not a polo style shirt since it is difficult to get shirts over your head with the PICC line).

  9. White noise machine or ear plugs. We sleep with a white noise machine at home, so we were definitely bringing this no matter what, but I think it would be helpful here. The apartments are overall quiet but you are in the middle of a very large city. If your apartment is on one the higher floors then you will hear more of the sirens and the trains. We are on the 1st floor so our view is blocked by a large concrete wall but this also keeps out the noise. If you are used to living in a quiet suburb or the country then a sound machine could be very helpful (there are also white noise apps for your phone). This is our Dohm noise machine which we lovingly carried from home.

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    Dohm white noise machine
  10. Tegaderm covers for the PICC line. Not everyone needs a PICC line, but if you have one these covers make it much easier to take a shower and keep the dressing dry.

    A previous patient and Facebook friend sent these to us (thanks Karen!) and we were able to share with the other two patients who also had PICC lines. The alternative is to use a plastic bag and tape, but this seemed easier. Get the big Tegaderm pictured here.

  11. Backpack or shoulder bag. We used this as a carry-on for the trip and it came in handy to carry everything we needed to the clinic and hospital for chemo and stem cell recovery and transplant. Anji likes a nylon one so she can wipe it down with sanitizer more easily than a leather one.
  12. Masks for the trip home. The clinic will provide simple ear loop masks for you during neutropenia (these are to wear when you go to the clinic or if someone visits the apartment–you don’t have to wear them in the apartment). We also bought a reusable N100 mask (around US$8 from Amazon) for the plane ride home. This was recommended by numerous people on the Mexico HSCT FB page and we think it will be more comfortable and safer than the ear loop masks for the plane ride.
  13. Pesos. We ordered pesos from our bank at home a few weeks prior to our trip (a few hundred $ worth). We felt more comfortable having ready cash for tips or emergencies. That being said, everywhere that we have shopped has taken our credit card and we have charged almost everything. Some posts on the Mexico HSCT Facebook page have indicated that you can use or should use US dollars for tipping but that must be in Puebla. In Monterrey, you can’t and shouldn’t try to use dollars. This makes sense, I’ve never used USD instead of the local currency in any other country either.

Things we brought that we didn’t need:

  1. Full shampoo and soap bottles. You can find virtually any type of shampoo or soap at the grocery store, so unless you are very particular, I’d recommend just buying this once you get here and saving some space in the bags.
  2. 3 prong converters. We had read on the Mexico HSCT Facebook page about needing 2 prong to 3 prong converters in the apartment. This must have been in Puebla, because our apartment in Monterrey has all 3 prong outlets just like in the US.

Things to help prepare for the first day here:

  1. Make a shopping list prior to arrival of what you might need for the first 2 days (simple breakfasts, sandwiches, simple dinner, snacks, toiletries). That first Sunday you are here the drivers will take you to the grocery store. On Sundays, that store is very, very crowded and it will feel overwhelming. Just do your best to get the basics and then you can go back Monday or Tuesday once you are more settled. Anji has alternated between going with the drivers for larger shopping runs and walking over with another caregiver for smaller purchases. The store is much less crowded during the week. There is also a corner gas station nearby for drinks and snacks.
  2. There is a welcome basket for everyone with some snacks. If you are arriving on Saturday or late on Sunday, you might want to bring extra meal bars or peanut butter crackers to tide you over.
  3. You will be very well taken care of here and there is a cell phone provided with which you can reach the doctors, the clinic staff and other patients easily. The drivers are very helpful in translating/helping you find items at the grocery store too.

We hope this helps and we’d be happy to answer any questions. We look forward to “paying it forward” after all the kindness and advice we’ve received from previous patients over the last year.